In the Spotlight

Today we had the honor of being showcased on a new blog I’ve been reading, This Little Miggy Stayed Home. Every Friday Miggy does a Special Needs Spotlight on a child and their family. This week Sebastian got to be the star. So go check it out. You will be happy you did. Be sure to check out her stories and adventures with her two beautiful daughters too. And stop in again next Friday to see who you can meet next in the spotlight.

Thanks again Miggy.

Above photo is from school this fall. A little sneak peak at what you’ll see in the spotlight post.

Motor Skills

This afternoon I was reading one of those updates for your baby at ‘this many’ weeks. For week 13, the motor skills are starting to develop with the fetus moving his/her arms and legs. My first thought? I imagined Sebastian’s arms and legs moving freely. I remembered him kicking my belly and moving around. I thought, Sebastian’s motor skills worked perfectly. Until he was born. There was a time where his body did everything easily, albeit in a tiny space. I was sad for a moment. Later in therapy I watched him hold himself up in side-sitting position, his hands in front of him, then reach his left hand up to push a button on the toy in front of him. He’s getting his motor skills back. Just in a different way. On a different path. One movement at a time.

Although the photo is a bit blurry from his movement, I absolutely love how proud he is of himself and the fun he is having.

AGO

We waited until the last day of the Chagall exhibit and went to AGO (Art Gallery of Ontario) on Sunday. Procrastinators. It was a sunny and extremely cold day, perfect day for an indoor outing. We parked in Chinatown and walked a couple blocks to the gallery. The gallery was busy and the exhibit even busier. Even though several elevators were out staff were very accommodating and helped us find our way to quite possibly the largest elevator I have ever been on. It was our first big walking outing with the wheelchair and Sebastian ROCKED. I usually bring the stroller so he doesn’t get too tired, as he has to work hard to hold up his head and sit up in the wheelchair. I wanted him to be closer to the height of the paintings as well as the crowds of people. In the stroller he is often treated like a baby and crowds find him lost below the crowd. In the wheelchair he can see people and smile. It also makes it easier for us to engage him in discussion about the paintings. Which we did. I was so proud of him. I was also able to see how grown up he is getting and how important it is for him to be in the wheelchair, especially for such outings. We went to the exhibit, had lunch, and then did a bit of modern art exploration. Then Seb and I were ready for nap time!

I forgot my camera so did my best with the phone and a little photoshop express on the iPad. I love how interested Seb is in the artwork. What a fun day!

When Yoga Failed Me

Ali has encouraged me to get back into yoga since Sebastian was born. My last class was a little less than a week before he was born. Before doing the pre-natal class, I had done yoga for years, starting on Saipan Island, where I took classes and practiced every morning with the sun rising over the pacific ocean, crimson through the framed mango trees. I took classes in Bangkok, just down the street on Thonglor, regularly. I took classes in India, while traveling with Ali. I practiced with cards and books at home. And I looked forward to doing yoga when pregnant. Once a week in London I took a bus to my class and became friends with other pregnant women, all in varying stages. I practiced the golden thread breath and imagined it getting me through the throes of labor. I strengthened my muscles and my body. I connected with my baby. I took time to clear my mind and let the work week melt away from my body and mind. I trusted yoga would help me get through my labor.

I was wrong.

The golden thread breath did not calm me or make my labor pains any less. I did not feel like I had the stamina or strength I had gained from my weekly classes after bouncing on a ball for two days while my waters leaked from my body. I did not have the energy or clarity I had gained in yoga class while I became more exhausted with each trip to the hospital only to be sent home twice. Or nights without sleep as I labored for 30+ hours. Yoga was not with me in the room when I had to push but I couldn’t feel my lower body because of the epidural I was forced to get. The golden breath had long left me when my son was born without breath. In labor, yoga had failed me.

I didn’t realize this for months, possibly even years. Ali asked me why I didn’t want to do yoga anymore and I just thought I didn’t have the energy from lack of sleep. I made one excuse after the next until yoga day, I realized I believed that yoga had failed me and I just couldn’t do it anymore. So I didn’t.

I am not one who works out. I like to walk. I’d bike if I had one. I love being outside in nature. I attempt to garden. But I always loved yoga. And then for 3 years and 7 months, I didn’t.

Tonight I did yoga for the first time since I was pregnant with Sebastian. I just did a 30 minute pre-natal yoga DVD I purchased this summer at the resale shop, in preparation for hopefully getting pregnant in the year ahead. Each pose flowed through my body as though I could perform them in my sleep. I knew each one by name and did them with ease. Memories from my pre-natal class in London came flooding back and during relaxation pose I just started crying. In yoga teachers often say that poses can open up your body and your emotions just flood forth, laughter and tears. Although I have always connected to poses with my breath I have no recollection of bursting into tears or laughter, until tonight. I remembered my big belly where Sebastian went through each pose with me. I remembered my teacher that I never called after his birth because what could I say? My baby was born not breathing. He was in hospital for 16 days. He has cerebral palsy from his traumatic birth. It was for these same reasons I felt I could not call the friends I had made in class either. So I just closed the door on that chapter and yoga altogether.

Until tonight. And next time, it will be easier. Less emotional. Because there will be a next time. Maybe even tomorrow.

Yoga. I’m back.

The Best Part of My Week

Happy New Year from The Sharps, times FOUR! 12 weeks today. Simply over the moon. And so looking forward to being over my extreme morning sickness.

So now ya’ll can see why I’ve been hybernating…

The Muppets!

A couple weekends ago we took Seb to see his first film at the cinema!

Muppets poster.

We now live within walking distance of an assessible theatre. It took us about 15 minutes to race there. Running a little late, I had to run alongside Seb while Ali pushed him in his wheelchair. Although we were planning to have Seb on our laps, we wanted him to feel a part of the process of getting tickets, etc. Being in his chair he is much higher up. I also think people see him as a little kid instead of a ‘baby’ compared to being in his stroller, since he’s such a small guy. The look on his face speeding down the sidewalk was priceless. He was having the time of his life. He loved looking over at me and we were both laughing as I tried to keep up.

In the lobby.

Once we got to the Ciniplex, we had to find an elevator in. That wasn’t easily done. Lots of escalators but only one designated elevator area. After getting to the cinema, we purchased our tickets. We have a special pass we purchased from Easter Seals, called Access to Entertainment, which allows one person accompanying Sebastian to go free to movies, museums, and other fun places around Canada. We then had to take a small elevator up, just for folks in wheelchairs, to the theaters.

Here we go!

Since we were a little late we were worried about getting a seat. Thankfully they offered to exchange our tickets if there wasn’t a place for us with the wheelchair. Because Seb would be sitting on our laps, so we weren’t too worried. Once inside, I saw that there was only one row which was wheelchair assessible with just one, maybe two places for wheelchairs. Theses spots were open, but the seats next to them were not. There was a short Toy Story film on, so we parked the chair and went down a couple steps to the second row in front of the big screen. I wanted to make sure we were on the end so we could leave early if we needed to. I had no idea how Seb would do.

The Muppets was a hit, for all of us. Seb enjoyed the entire movie, only startling twice to loud noises. Overall, the sound wasn’t overwhelming, which I was thankful for. He was mesmerized by the big screen and all the singing and dancing. He’s a huge fan of Sesame Street and we had watched The Muppets Take Manhattan at home to see if he’d like this one. He was an instant fan, smiling at the funny parts and enjoying the jokes and songs. One of my favorite parts was when the muppets cleaned up their old theatre to ‘We Built This City’, by Starship. One of my brother Josh’s favorite songs as a kid. The flashbacks the the 80′s were a real treat.

The final credits rolling. Papa-daddy sports a mo for Movember.

The best part was getting to go see a movie together as a family. For us, it was a very big deal.

Melt My Heart

School stories are the best. While I was putting Seb’s coat on today, one of his teachers came over to share a story about playtime in the soft gym today. When the weather is too wet or too cold, they have an indoor play area filled with mats and other fun stuff. Like the slide. Seb loves the slide. Sometimes he goes down on his own, laying down, and sometimes he goes down with a friend.

Today he went down with one of the girls holding him tight. He giggled all the way down. At the bottom of the slide she said, ‘Bastian, I love you.’ Can you imagine it? A little girl, 3.5 years old, who has limited verbal communication skills herself, hugging my son and saying such beautiful words? I melted right there. Tears came up in my eyes and I let my smile take over.

I am so thankful for those stories. Those teachers listening and sharing those stories. Those children holding on to and loving Sebastian, creating those stories. The fabulous school fostering an environment for such stories. And inclusion. For making those stories possible.

After taking a break from the slide for some other soft gym fun, she later found Seb again, requesting he go down with her, one more time.

Dear Free As Trees,

It has been so long since I have sat down and spent some time with you. You are often on my mind but always there are so many other things to do. Now that we have moved and live so close to Sebastian’s school, I don’t have to camp out in the library next door. This means I have a couple hours in the morning in our new home. You are on my mind while I tidy up, unpack and hang pictures on the walls. You are on my mind while I organize paperwork and make important phone calls. You are on my mind when I take photos of Sebastian giggling and of our brisk walks in our new neighborhood. I have a list of items to share with you. But as time passes, the list gets smaller and smaller as I feel silly focusing on something that has already long ago passed. So today I take a moment and say, ‘Hello! I am still here.’ My mind and time have just been a bit pre-occupied. Oh and did I mention I am taking another Memoir Writing Class? So I have to spend some time with her too. Please be patient with me. I promise, I will write more soon.

Ever faithful,

Kara

Happy 30th…

…to the best husband and papa-daddy ever. We love you and look forward to celebrating many more birthdays with you.

Taking breakfast to Papa-Daddy.

Family time by the river after a short walk in our old hood.

More yummy food for the birthday boy! I cooked my first steak after getting some advice from a lady at the local butcher. I had a portabella mushroom ‘steak’ myself.

Triple chocolate birthday cake. Recipes from one of my grandma’s cookbooks.

Sebastian helped me make the cake and frosting so he was very excited about his dad getting to blow out the candles. He was also very proud of the cake we created together. It was an awesome feeling to see him so excited about his papa-daddy’s birthday.

Welcome to decade number three Ali!

Happy Halloween from the Curious Sebastian Crew

Starring Seb as Curious Sebastian with appearances from Papa-Daddy in the Yellow Hat and Mama Monkey.