Family

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.

Happy Birthday Sebastian!

My brother Bill and his wife Shannon

My niece Addison and nephew Parker

Sebastian and his cousin Ethan with Papa-Daddy

The kids and 31 week pregnant me

A very tired Sebastian with his Uncle Bill

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.

Sebastian’s New Glasses

About a month ago, Sebastian flung his glasses off during snack time at school and before the teacher could pick them up off the floor, another classmate stepped on them. Thankfully a nearby shop was able to salvage them. Until a couple weeks ago when he pulled them into his mouth and bit down, unable to unclench his teeth. The lenses were damaged beyond repair and with the previous damage, it was time to get a new pair.

So we went shopping! Seb picked them out himself. His two favorite colors. Red and blue. I would have picked a different, more subtle pair. But he was so happy and turning four! Certainly old enough to decide on which glasses he wanted. It also felt really good that he chose them. And now I can’t imagine him in another pair. They are perfect. Suit his happy personality so. We love them!

Sebastian’s Big Day

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.

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.

Mother’s Day

Seb and Mama, NICU Cuddles

On my first Mother’s Day I was waiting for the second bus that would take us to see Sebastian who was bunked in at the hospital in the NICU. I had been discharged from the hospital a few days before after my own five day stay. It was the first Mother’s Day my mom and I had spent together in probably a decade. I remember how excited we were about it. But by the time the day had come we had forgotten. It was not Mother’s Day the UK, they celebrate in March. The only thing on our minds was getting to Sebastian to see how he had slept and how much he’d eaten the night before. I’m sure we were waiting for some tests results too. But I don’t know what I would have done had my mom not been there. I’m so very thankful she was.

My Mom and Sebastian

While we were waiting for the bus my phone rang. When I picked it up two very dear friends from Michigan were on the line wishing me Happy Mother’s Day with great enthusiasm. I burst into tears while smiling at the same time. Such a bittersweet moment. I should have had my son in my arms. Soon enough. Just one more bus ride. I don’t know if they know how much it meant to me that they called to remind us of what a miracle the day was. I was a mama! And Sebastian made me one. Even if it got off to a rocky start, it was a start. And I was happy.

Mama, Seb, and Baby in the Belly

This year my boys treated me to a delicious brunch at a nearby cafe, with gelato for dessert. Seb rode his bike for a bit and then we all had a good afternoon nap. With the sun shining we went for a walk to the park and did all the things Sebastian loves, swing, bounce and slide. Later, Seb had fun watching Papa-Daddy make pizza for dinner and we finished our night with a couple good books in the rocking chair. And this year not only did Seb make me a happy mama, but so did the babe in my belly. Moving during the quiet moments of the day and sometimes stopping me on our walks with the need for a break. My family makes me so happy. All three of them. Thankful.

Sebastian Gets a Ukulele for his 4th Birthday!

Sebastian loves music. He loves listening and dancing to music.  He has dabbled in making his own music with shakers, bells, piano keyboards, xylophone, and even a wooden drum. He has plastic toys that light up and play music when he pushes the right buttons. He has soft toys that play music and used to get him through his early days of therapy when nothing else did.

When Sebastian started school last year he was mesmerized by the music (therapy) man that came in twice a week to play his guitar and sings songs with the class. His repertoire includes songs from Jingle Bells to La Bamba. We even have a photo of him on our fridge, Sebastian is sitting on his lap, looking up at him with his tiny hand on the guitar.  This year his teacher holds him up so that he can walk towards W strumming the guitar and dance along to his tunes. One morning when I arrived to pick Sebastian up, three girls had made a circle with him. Two holding on hand each as they all danced together, Sebastian grinning from ear to ear. Moments like this I smile big and hold back my tears of happiness.

When we visit our friends  in Holland, J gives Sebastian personal concerts with Sebastian content to sit and listen to him all afternoon. We have an app on the iPad that is a mini guitar which is easy for him to strum (a piano one too). When we started thinking about his birthday gift, we looked around at toy stores at ‘authentic’ small toy guitars and they were priced outrageously.  I spoke to the music teacher and he mentioned a ukulele, small in size with plastic strings. He said kids were learning how to play them in school instead of the recorder these days so they are durable and reasonably priced.

So that’s what we got. Sebastian’s new favorite color is blue – although he still loves red – so we went with the blue. As you can see from the photos, it was a hit. He needs our help to play it, but he started opening his fingers and moving them over the strings and sometimes grabbing them right away. He’s also fascinated with the tuning keys. It seems like he’s checking it out and wondering how he can do what the musicians in his life have done on their big guitars. He took it to school on one of their music days and played alongside his music teacher, which I imagine was pretty exciting for him.

The next time we visit Holland, he will be ready to join J and A’s kids in their band, kitted out with a guitar, a drum kit and soon to be ukulele. We will be sure to invite you to their debut performance. Until then, we practice!

For even more photos of Seb and his Ukulele, please check out the Blurb Mobile photo slide show.

Reading with Sebastian

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.

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.

And the winner is…

Sebastian!!!

We played our first board game today, Dr. Suess ABC’s, and Sebastian beat me. After a long afternoon nap (which we’ve enjoyed only twice in the past two weeks) Seb was able to play for 45 mins. When I asked him if he wanted to stop or keep playing halfway through, his choice was to keep playing.

How did he do it? I held up the spinner for him and he reached with his left hand to move it; he spun a lot of 3′s and 4′s! I moved the game piece, counting each space, and we looked for the card with the correct letter together. I held it up for him to see and showed him the letter, reading the card and pointing to the picture which matched the words. He really enjoyed taking turns and being able to participate in the game independently as well as with my help. He was sitting on my lap at our dining table so he was able to have support and see the game pieces easily.

It was the perfect activity for a grey afternoon. As we don’t have therapy until Thursday of this week we are doing a literacy activity every day. Stay tuned for more literacy posts.

Team Seb Can Do

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.

Wordless Wednesday: For Sebastian

Created by Sebastian and Mama.

Paper

Do you know what it’s like to have your child monitored by doctors of all kinds? Do you prepare notes and count seizures for your next neurology appointment? Do you cringe at the thought of having him weighed or his height measured because even though he looks bigger and his clothes fit less, on paper he is not growing?

On paper he is a child whose seizures are under control enough to be transferred to a community neurologist. But will they be good enough? You wonder. You worry. The doctor sits across from your child and asks him to do simple things like look at your mama or give me your hands. Your child can do this and so much more. But he doesn’t speak. He doesn’t play like other kids so the doctor looks at his papers and sees a diagnosis instead of a child who loves the world and everything in it. A child who laughs at the jokes in Elephant and Piggie books but the doctor assumes there is nothing inside because he can’t show you in the way others can. A doctor who can be kind but condescending at the same time. Because she sees your child as a patient. Not a child. But he is a child. He is my child.

On paper he is a child that has not grown in cm or kilos in the past four months but he is healthy and happy. A child who now walks 20-30 mins a day in his walker, eating up his calories so on paper it looks like he is not growing. But he is. And you argue with the doctor to remind him that you are the mother and he is your son and he is well. He is more than well. But you know he needs to grow more.  You want to cry but instead you are strong. The tears come like bursts of rain in a storm. Only when you are alone. And you order the next magic supplement and hope it will be the one. You get on a waiting list for a new doctor you don’t want to meet. And you pray. That someday there will be no more doctors telling you how your child, that patient of theirs, number 502, must live his life.

Later you watch your child. Head up. Smiling. Then laughing. He is riding a horse. He is strong. He is growing. In ways which no paper can measure. And you are thankful. And the heartbreak that sometimes comes with parenting turns into happiness. There is your son. And he is happy. He is love.