20120530-192108.jpg

On May 6 Sebastian turned four. On his birthday every time I said, wrote or even thought ‘today is my son’s 4th birthday, I teared up. Not because I mourned the four year old that he was not or the birth day that did not go as planned four years ago. But because I celebrated the birth of my son and all that he has already become. All that he has already become. We were ready to celebrate. And celebrate we did. A party at school. Opening gifts the morning of. A race in the Toronto Marathon and a big happy birthday song with the RWWR team and friends afterwards. And finally, belatedly with family in Michigan.

In Sebastian’s 4th year he will become a big brother. He will get a communication book and hopefully a communication device. He will attend his pre-school one more year because I don’t believe in full day kindergarten at age four for my son. And because he goes to the best school ever. He will spend afternoons with his new sibling and keep up with therapies. He will continue to smile and enjoy life and hopefully grow grow grow. All of these things he’s already being working on.

Since Sebastian turned 3, he’s been practicing riding his bike. He’s been walking in his Kid Walk so often and with such motivation and determination that now he not only walks on his own at school, but at home. He needs help with steering, although running into the walls produces quite a few giggles. He has walked up to 500 steps with his physical therapist once a week for the past 12 weeks. He races his friends at school and plays soccer and ‘What time is it Mr. Wolf?’ on the playground. He has done three seasons of Hippotherapy this year and with each one gains strength in keeping his head up and sitting strong on his horse, with a smiles and laughter mixed in.

Sebastian uses a head switch during circle time to say his name when it is his turn. He uses his hands to choose between activities using picture cards. He reads books with us at home using a pre-recorded switch and says ‘Goodnight’ and ‘I love you’ at bedtime. (Okay, he’s been doing that since we got the iPad when he was two.) He is ‘writing’ weekly with a team using a flip chart with letters and a low tech eye-gaze device. He has spelled ‘ee lev’ (I love) about a picture of him and his papa-daddy at the park.

Sebastian enjoys playing board games and card games and helping his mama bake, having made Christmas cookies and pancakes this past year. Sebastian has explored two museums in his wheel chair, the ROM and the AGO. He loved the dinosaurs, bat cave and the Chagall exhibits. Sebastian can now sit in his Seat2Go and enjoy dinner with us in a booth at restaurants. He makes choices like choosing his new bright blue and red glasses or which t-shirt to wear.

Sebastian still laughs at the jokes on Sesame Street and enjoys the adventures Curious George gets up to. This past year he went to his first movie at the theatre, The Muppets, and loved it. Sebastian can play for short periods on his own, but prefers company. He loves seeing my belly grow and ‘talks’ and giggles to it. He will be a fabulous big brother. Just like he is already a fabulous son.

Happy year number four Sebastian. We love you so much and you are absolutely our favorite little man. We are ready to enjoy another year of fun, adventure, and learning with you. One day at a time.

When we arrived in Michigan on Thursday late/Friday early (hello 1am), we were in for a big weekend, full of surprises. The first surprise came at 1.30am when my mom took us out into her garage. Seeing it set up with tables and items laid out, I was confused, perhaps cloudy from the late hour. My first thought was that the grandkids had been playing ‘store’. She told me to turn around and I saw a banner which said ‘Fund raiser for Sebastian’s therapies and meds’. I turned to Ali and burst into tears. Over the next two days my mom would collect over $500 from the sale and donations. All while doing last minute prep for the baby shower she was also throwing me on Saturday. On Friday afternoon Seb hung out with his grandma in his walker during the sale and met so many generous folks. One family with a three year old daughter spent time talking with Seb and then donated $100. I burst out crying then too. But the fund raising didn’t end there. When we arrived at Shannon’s birthday celebration at their restaurant, she presented me with over $300 from collections they did that week at Riley’s Roadside. And a birthday cake for Sebastian in a joint birthday celebration. The blessings just kept flowing. Although Sebastian was tired from his late night before and a full day of visiting, he had so much fun with his cousins. And this is why I wanted to move to Toronto. Being closer to family is priceless.

20120523-200409.jpg
Happy Birthday Sebastian!

20120523-200435.jpg
My brother Bill and his wife Shannon

20120523-200440.jpg
My niece Addison and nephew Parker

20120523-200450.jpg
Sebastian and his cousin Ethan with Papa-Daddy

20120523-200500.jpg
The kids and 31 week pregnant me

20120523-200512.jpg
A very tired Sebastian with his Uncle Bill

20120523-201034.jpg
Sebastian opening gifts from his cousins, Aunt Shannon and Uncle Bill

Silently we’ve been struggling since we moved in November. (Moving every year or two or even three, ain’t cheap.) We just keep truckin’ on and hoping things will balance out. Never could we have imagined the blessings and generosity of loved ones – friends and family – in our lives over the past two weeks. With these donations Sebastian will get the (private physical) therapy he has not been able to get consistently for the past several months, as well as pay for the hippotherapy he is currently getting. These donations also enable us to add new therapies (like osteopathy) and help pay for medicines and new diet supplements. Because we are finally on a cycle of OT and PT through the government health plan, Sebastian has been receiving (minimal) therapy once a week. But we want more for our son. I cannot truly express how thankful I am for the generosity and kindness of family, friends and strangers we experienced this weekend.

In March we became eligible to apply for benefits for Sebastian which will help pay for his private therapies. We should hear from them within 90 days. We also have organizations like Easter Seals and Ontario Federation for Cerebral Palsy which have helped us in the past with things like equipment (Seb’s walker) and Hippotherapy. But these organizations generally run out of funding by Spring after stretching it out to many families in need. We have also chosen to send Sebastian to a special pre-school program which is not free. Although we know that this takes away from his therapy funds, we believe that the experience and learning he receives at school is invaluable. Because we want the best for our son, that involves balancing life and therapy.

$740 was raised on Gemma’s 20 mile bike ride for Seb Can Do! We are so thankful. This amount will cover Sebastian’s Hippotherapy sessions for this term as well as a couple private therapy sessions. We cannot express our gratitude enough.

20120515-104530.jpg
At the finish line.

On Sunday, May 6, Sebastian and his Papa-Daddy ran and rolled in the Toronto Marathon 5k in the Run, Walk, Wheel, Roll event which raised over $24,000 for Three to Be. Sebastian also celebrated his 4th birthday on this special day. Our friend Elisabeth and Sebastian’s teacher came out to celebrate, along with one of his classmates and the whole team that participated in RWWR. They even surprised us with a birthday cake for Sebastian! We are so thankful for everyone who donated and took part in such an important event for our family.

20120510-222541.jpg

20120510-222550.jpg

20120510-222556.jpg

20120514-195400.jpg

20120514-195418.jpg

For more photos of the big event, visit the flickr slideshow I have created RWWR Toronto Marathon 5k. All photos of children are private and not viewable in the set due to privacy reasons. There were many friends celebrating with Sebastian, giving him hugs, bringing him gifts and checking out his medal. It was such a special day for all of us.

Thanks again for all of your donations and support. Sebastian raised $746 for RWWR/Three to Be with your support.

This post has been cross posted at Free As Trees.

Today we have a guest post from an old friend that has become one of our biggest supporters in so many ways. I’m so thankful for her big heart and generousity. About a month ago she approached me with an idea to raise funds for Seb Can Do for her 20 mile bike ride. I was touched by her kindness and motivation. She has asked family and friends to donate to our fund to help pay for Sebastian’s therapies. So far she’s raised $250, which will pay for his Hippotherapy sessions in May.

Please read her story below. If you’d like to sponsor Gemma on her big ride this weekend you can do so through the PayPal button to the right. Thanks so much.

20120509-104659.jpgGemma’s daughter and husband.

Seb’s mama and I attended high school together and like most I hadn’t spoken to her in years but then through the power of Facebook we reconnected just before the love of my life, my daughter Alex entered my world and not too long after her baby boy was born, Seb. Seb went through a traumatic delivery and as a result he has moderate dystonic cerebral palsy, which affects all four limbs and motor function. To me Kara is the most inspiring mother I have ever had the pleasure of knowing. She fights every day for Seb for simple things I know a lot of people take for granted. Because of her I don’t take for granted anything Alex does from climbing to running to saying “mummy”.

Seb is so intelligent and he is just like most children as Kara says it just takes him a little longer to achieve the milestones that come easily to most children. For him to achieve these milestones it costs a lot of money and involves a lot of therapy and specialty equipment. The Sharp’s devote every free penny to Sebastian. Every penny. Just a simple bike that brings endless joy to many children costs almost $5,000. And you know what I think? That’s crap.

When I think about Alex’s upcoming third birthday a bike is on our list. Lately, every bike store we go into or retail store that sells bikes, Alex wants to “test them out” and watching her get so excited always makes me pause for a moment because it’s almost a given that she will ride this bike and get so much joy from it. Seb, like every child, deserves that same joy. For his third birthday last year his parents were able to give him a bike. But it cost close to $5,000. He loves his bike and the pictures alone just bring so much joy to me; I can’t imagine how his parents felt watching him ride his bike. Knowing that he was doing what so many other 3-year old’s were doing at that exact moment.

From two weeks old he has been in physical therapy, occupational therapy and speech and language therapy. None of that is cheap or easy for him and yet he continues to smile. A big wide amazing smile.

I am doing a 20-mile bike ride on Saturday and asking family and friends to donate to a boy that they do not know to help him to continue to achieve the milestones I see Alex making. Things like riding a bike. Amy small donation will be greatly appreciated and will go to an invaluable therapy session or equipment. It is a rare thing to see the difference you can make in the life of somebody else. In this case you’ll see Seb working hard to achieve one small step and how big of a smile he makes by taking one step.

20120509-105037.jpgSebastian on his new bike on his third birthday.

Footnote: Gemma lives on the other side of N. America and we haven’t seen each other since I graduated highschool.

We have been working with a CWAS (communication and writing aides) team (SLP and OT) for a few months. They have gone into Sebastian’s school to evaluate him as well as worked with him in our home to decide on/try different ways to help him access communication. They’ve then been back to reevaluate him to see how the equipment they have loaned us is working in both the home and school setting. Their first visits to our home focussed on providing access for communication using switches, such as a Big Mac switch and a head switch in conjunction with picture cards and computer games/stories (more on this in a different post). Currently the team is coming once a week to do literacy/writing activities with Sebastian using eye gaze and smile confirmation using both a flip chart and a low tech device (more on this in another post).

At home we are integrating the Big Mac switch with a reading activity with Sebastian. We choose a few books with repetition, such as Eric Carle books. After Sebastian chooses the book he would like to read we record the repeated phrase into the switch. He sits in our lap or in the bean bag with the switch in his lap for easy reach. As we read the book, when we get to the phrase we tell Sebastian it’s his turn to read and he hits the switch. After a few times he doesn’t need prompting and can anticipate when it is his turn. This is a great early literacy activity. He can take part in the reading of the book and also learn the phrase just as verbal kids who re-read their favorite book learn to ‘read’ the words from memorization.

Here Sebastian is reading Polar Bear, Polar Bear, What Do You Hear? with his papa-daddy.

20120501-201717.jpg

20120501-201731.jpg

20120501-201745.jpg

20120501-201758.jpg

Although I taught kids from kindergarten to grade 3 and did extensive work and research in literacy learning, I continue to learn about how I can teach my non-verbal son how to read. Introducing him to words and letters in different ways is just the beginning. We have always read with/to Sebastian, since he was in the womb. He has a very good understanding of the importance of books and has a love for reading with us. Even though he can’t pick up a book independently and leaf through the pages, we give him many opportunities to do this with us, as well as with other family members and friends. Every night he chooses which book we read at bed time. We hold two books in front of him and he takes some time to look at both and then reaches for the one he wants, smiling. Sebastian has favorite authors and books, just like his mama and papa-daddy. (I can do another post about favorite books/authors too.)

Learning how to read and ‘write’ will enable Sebastian to communicate his thoughts and feelings, hopes and dreams. It will open up a world for him that many of us take for granted.

image

On Sebastian’s 4th birthday, May 6, we will be celebrating by participating in the Toronto Marathon. Team Seb Can Do will be participating in the 5k Run, Walk, Wheel, Roll (RWWR) while also supporting Three to Be, a fantastic charitable foundation focused on advocacy and raising funds to support innovative research, education and therapies for children with neurological disorders.

Sebastian and his Papa-Daddy will be Running and Wheeling in the race while this 28 week pregnant Mama will be cheering from the sidelines, and probably crying with pride too. If you are in the area and would like to join us, please get in touch and I will forward you the details. If you are not in the area and would like to show your support, please visit our team fundraising page Team Seb Can Do on the RWWR website. There you can leave a special message for Sebastian too.

After the race we will be having a small gathering of friends at the Three to Be tent for treats to celebrate his 4th birthday. It will be a big day for our family!

RWWR is a multinational volunteer initiative designed to provide experiences that transcend the physical limitations of the body.  We do this by pushing children with physical, cognitive, and neurological disorders through marathons, half marathons and other physical endeavors while simultaneously building awareness and raising money for the amazing causes that support these children.  RWWR is unique because kids are given the opportunity to become actively involved in raising money for research and programs directly benefiting them!  Since its conception in 2009 RWWR has assisted over 50 children participate in first time race experiences and in the process has raised over 50 thousand dollars for our partner programs.  

All funds raised through RWWR 2012 will be going directly to THREE TO BE in support of their incredible work in the development of innovative research, education and therapies for children with neurological disorders.  Become a friend of RWWR.  Support us with a donation or join us by running your own race!

See you at the finish line!

Although we have reached our modest goal we are hoping to go above and beyond. Please consider joining our team or donating by visiting Team Seb Can Do on the RWWR website.