Five Minute Friday: Song

Sebastian and I, we have many songs.

Since you were a baby, I’ve sung you songs – in my not so smooth singing voice.

To take a bath we sang ‘Itsty Bitsy Spider’ before, during, and after. It puzzles us that you ever hated the bath in those early days after your birth. Maybe it was the damp London air. Maybe the recline in your little tub was too much for your reflux.

To lull you to sleep when your tummy rumbled from constant reflux, I sat on my big lavender coloured birthing ball and slowly bounced you on my lap or against my chest. The dog next door barked. The strong, bright rays of the Cairo sun found their way into our cool air conditioned bedroom. I sang songs from your favourite CD, Elisabeth Mitchell. ‘You are my sunshine’. ‘Three little birds’. ‘Lady bug picnic’. This calmed you enough to get that milk out of your tummy and into a restful sleep.

To calm you in the car we stocked up on CDs. Elisabeth Mitchell. Billy Jonas. Sesame Street. Laura Viers. Road trips to Kentucky and Michigan and home again to Toronto.

To get your mind off an uncomfortable air bubble or full tummy after a meal, we have dance parties. We love dance parties. The Avett Brothers. Serena Ryder. And papa-daddy sneaks in some Aesop Rock when he can. I pick you up into my arms and twirl you around. You are laughing. Worries and pains have all disappeared. When I hold you close and see the complete happiness on your face, I am overcome with emotion. And so thankful to have you as my dancing partner. I want to cry tears of joy. Every time.

Linked up with Five Minute Friday.

Wordless Wednesday: Party Time

Film Possible Fete

Today was the big day!

This afternoon we went as a family to accept our award for Seb Can Do.

Sebastian was so excited. He was treated like a star. We met the other families behind the other winning videos and photos.  He was feeling a bit overwhelmed by all the clapping and loud music, so we watched from the back, even though we had reserved seats with the other winners.

As soon as our video came onto the big screen, he was calmed by the music.

And then Sebastian and I accepted our big prize.

So many folks came up to congratulate us and meet Sebastian: judges, other winners and their families. Sebastian had four folks/therapists that he works with stop by the awards ceremony to congratulate him. I love that Sebastian is so loved. It reminds me that we are in the right place.

And now presenting to you, dear readers. The original video in its entirety posted on Vimeo. (The password is ‘sebcando’)

Seb Can Do from Kara Sharp on Vimeo.

You can still visit filmpossible winner spotlight to see our video as well as the other awesome winners!

Wordless Wednesday: Then she did this.

Mic-Key Twins: Sebastian and Patches

Waiting with Patches to see the GI clinic nurse.

Sebastian graduated to his Mic-Key button today. He was a superstar. I’m so thankful his Papa-daddy was there to hold his hands while the nurse popped his g-tube out and placed the new button in. I distracted Sebastian with Curious George on the iPad and Tallula cheered him on.

We then had a short session afterwards to learn how to take care of it (there is a tiny balloon filled with sterile water at the end of the inner tube keeping it in place that we need to check and change the water weekly). I’m going to set up an appointment for end of June to learn how to change it/put it in if it comes out since we travel to Michigan somewhat frequently and will be traveling on holiday this summer. She usually teaches parents who want to know at the 6-8 month mark when the button needs changing. At my request, she agreed to a session earlier, though we won’t be changing the button. (We pay for them each time and they aren’t cheap!) I personally prefer to have a nurse take care of such things, though knowing how to do it if necessary is empowering and really just practical!

Finito! Cuddling with Patches for the ride home.

Sebastian seems very comfortable and it looks great! Gone is the fear that it will get tugged and pulled out. Although not impossible, it is less likely than having an external tube dangling from his tummy. And gone is the tape to hold that longer tube in place and also the alcohol to rub the tape and sticky stuff off every night! His tummy survived, skin still soft. But he is tougher for it.

My big, brave, 5 year old boy!

I have a few questions for other button mamas/caregivers out there: venting seems more challenging than with the original tube, any tips? Also, do you prime the milk through the extension set before attaching to the button to avoid air? How to avoid air when putting meds in (through extension set)? Avoiding air bubbles and getting them out is a big deal for Seb. Thanks in advance!

Five.

Dear Sebastian,

Today you are five! You are such a big boy. I am so proud of you and how far you have come. The celebrations started on Saturday and didn’t end until bedtime today. Each day full of sunshine. Life is good.

This year you became a big brother! I think Lula agrees that you are the best big brother ever. You don’t get mad when she turns the tv off when you are watching Sesame Street. You enjoy watching her discover the world around her, even when that means interrupting yours! Her laughter fills your heart with happiness and soon we are all giggling together. You don’t mind that she crawls up onto you and pats your face, sometimes accidently poking you in the eye. Or that she reaches for your glasses like a reflex, even though she shakes her head no, knowing they are yours. You love your sister unconditionally. And she loves you.

You are in your third and final year of pre-school this year. Even though you were old enough to move on last year, we wanted you to have this time with your sister. And I just wasn’t ready to give you up for a whole day of school just yet! You continue to make friends with everyone you meet and next year you will hop right into senior kindergarten. Such a big boy. Our hallway is adorned with your artwork, created in so many different ways.

You traveled to your birthplace, London, in November. Before we moved to Canada, you were a pretty seasoned traveler, having taken your first flight (to Switzerland) at 3 months and then moving to Cairo when you were just 4 months old. It was exciting to get on the plane again and have a new adventure, this time with a baby sister along for the ride AND your Red Racer. You were certainly a man about town in the big L O N D O N. You loved exploring, from the art on the walls at the Tate to the buskers on the street playing music in Broadway Market. You are a fabulous travel companion.

In January you got a Gtube. It has been a bit of trial and error and eventually success. You are so brave and such a superstar. You were able to laugh even when you felt your worst. Some afternoons and evenings have been really tough. But you keep on keeping on. Tomorrow you will get your button, just like Patches. I hope it is even more comfortable and makes life easier for you.

This year you really developed your communication skills using your communication book. And your ‘yes’/'no‘ is clear for everyone. I’m thankful for all the folks in our life and even some strangers we meet that take time to wait and ‘hear’ what you have to say. Your book helped us get through the early days after your surgery when you just weren’t feeling yourself. It helped us understand how you were feeling and what you needed because it allowed you to tell us!

No more pictures Mama.

We are also working with the CWAS team to trial an eye gaze computer. So far, calibrating your eyes with the program is a challenge, but you’ve never been known to give up easily. We will continue to work on it as well as hone your skills using a switch to communicate in conjunction with a low tech and higher tech device. You are even using reading/writing to communicate with us!

You helped us Bring Visibility to Disability through the Filmpossible contest at Holland Bloorview. With votes from all over the world, you won FIRST PLACE in the Visibility Award category. This Thursday we get to celebrate and accept your award at the Filmpossible Fete. We are so proud of you and the way you bring light and happiness to all those you meet and even those you have yet to meet. You are a star!

You started taking music classes and have been able to try all sorts of instruments, including the VMI, a special instrument integrated with technology which allows you to create music moving your limbs. Last week you played the drums, using the movement of your hands and feet, for a half an hour straight!

As I reflect on the last year, I also see flashes of the four before. Five years of memories with you and every day I am thankful for more. I am so glad you are my son.

Love, Mama

Five Minute Friday: Brave

Such a big word. For my big boy. You have been asked to be brave, so many times. And without protest, you always are.

From birth you faced challenge and adversity. You breathed your first breath a little too late and not without help. But you breathed it. And you are here.

You have had more surgeries/under anesthetic procedures in your big 5 years (on Monday!) Than I have in my 36. And everytime you are brave.

You have a collection of therapists and teachers and friends in all of the places you have lived, and even a few in the places we have only traveled. You listen and work hard, trying new things everytime. You are brave.

You enjoy life and love flying high on the swings, speeding in your stroller or Red Racer. You like going on bumpy roads and through pretend bat caves. You roar with the dinosaurs and at the lions. You are brave.

Sebastian. My big, brave, almost 5 year old son. I love you so much my heart feels like it will burst open sometimes.

This post was written for Five Minute Friday.

Wordless Wednesday: Firsts Motivated by Curiosity

Number Nine

Dear Tallula,

You are 9 months today. Your hair is long enough to make a mini mohawk in the bath. Seb was impressed. But I think mama and papa-daddy were even more excited to see your hair growing!

You are on the move. I recall asking Sebastian’s PT at school when crawling typically occurs. She said 9 months. You are right on schedule. A few weeks ago you gradually made the shift from pushing backwards to moving forwards and now you are unstoppable. My favorite is how you come from one room into another to find me.

You get into EVERYTHING. Even though you have every toy you could ever dream of, thanks to Sebastian’s early collection, you prefer shoes. I imagine the day you will put them on your feet, several sizes too big, and dance around the room. For now, we are trying to teach you that chewing on them is ‘yucky.’

You fell off the bed earlier this month. I reached for your shirt to get you dressed and turned back to see you on your tummy pushing yourself over the edge, backwards. Your bum hit first and then your head. My heart raced and reaching you was like being caught in slow motion. Not fast enough. You cried and I held you close to my chest, praising God that you were ok.

You went on your first swing. All by yourself! We had so much fun. But you enjoyed it even more. We are looking forward to many fun afternoons at the park once the warm weather returns for good!

We enjoyed some early Spring sunshine at the Saturday morning Farmer’s Market at Evergreen Brickworks. You enjoyed being serious and silly with Papa-daddy as we walked around in the sunshine, munching on yummy treats and searching for frogs in the pond.

You love Sebastian’s Red Racer. Whenever he is in it, you crawl to him and try to climb up. I think you will pull up to stand there first. It will be so ironic and beautiful if you do. I know how much you want to be near your brother.

And his glasses. You love his glasses. You understand no and sometimes when you reach for them, you shake your head no, but your hand reaches forward. We love how you know that you shouldn’t grab them, but you struggle to resist the urge. They are just so irresistible!

You celebrated your first Easter! I made you a little stuffed bunny and my heart burst with happiness when you excitedly reached for it. We had a lovely Easter egg hunt and dinner at our friends in the late afternoon. You tried filling each hand with chocolate Easter eggs. I imagine you will have a sweet tooth like your brother and Papa-daddy!

Eating. I never knew I would have a child who is such an independent eater! You prefer feeding yourself. With a spoon. You like to chew on both ends. I gave you your first teething biscuit this month and watched you like a hawk. I am so afraid of choking. You sucked it in and when a small piece fell off into your mouth, you sucked on it until it was mush and swallowed. Your muscles know exactly what to do. Amazing. But I know I will still be cautious. Afterall, I’m your mama.

When you want to be held, you crawl to me, push up to sitting and bounce, arms out. Requesting I pick you up in a sing song voice. You started to say Mama and mean it. While grandma was visiting, I took Seb to school and therapy. You looked around for me and asked for Mama. You also started to stick your tongue in and out, making new noises. We think you are very fun! You are very independent and love to explore and get into things on your own. But when you are ready for company, you let us know. Whether it is by crawling up and onto Sebastian, or crawling towards us and demanding to be picked up, with your voice, you let us know exactly what you want, and you want it NOW.

You started to enjoy reading books for more than nutritional purposes and began carrying them around with you whenever we leave the house. Although you still refuse to hold onto us when we carry you, you hold firm to a book when we walk out to the car or into school to get Sebastian. No big surprise being raised in a home full of book lovers! Books are everywhere!

When you wake at night you move to sitting in the dark. I come in to your cries and reaching to be held. No more lying on Mama and Papa-daddy’s bed surrounded by pillows. I walked in to find you sitting up perfectly. Contemplating your next move. Almost had a heart attack.

I wish I wrote down your adventures daily because you have so many dear Lula. You amaze us and make us laugh with your curiosity, will and drama. Yes. You are already dramatic. Like your mama. And we love it. We couldn’t love you more sweet girl. We are so happy you make us a family of four. Mwah!

Pay it Forward

I had recently graduated university and just finished my student teaching. I was living at my mom’s and substitute teaching, preparing to go to the international teaching job fair later that year. It was winter. We were staying in a travel trailer next to the farm house they were rebuilding/remodeling. I read a lot of library books that winter. One of them was Pay it Forward. I remember sitting in my fold out bed, cozy under a pile of warm blankets, reading by a small light above me. I remember crying my eyes out through the end of the book. (Later there was a film with Haley Joel Osment based on the book.) The book is about a twelve year old boy that takes on a challenge given to him by his teacher, to come up with an idea to change the world. His idea is to do something kind for three people and when they ask what they can do in return for him, he simply asks them to pay his kindness forward. It’s a great idea. So great, that the term has been coined as a way to do kindness for others, without reward. Brilliant. It would be brilliant if society did kind things for each other all the time and didn’t expect anything in return. Sometimes they do.

You may be following Kate’s story about losing her son Gavin, on Chasing Rainbows. On her birthday she had to say goodbye to her son. She asked for everyone to do something kind for someone else, in Gavin’s name. In his memory and in celebration of her birthday. Beautiful. There are thousands of people all over the world reaching out and doing good things for others in Gavin’s name. Kate’s little boy has changed the world. Much like the little boy in Pay it Forward. But as Kate says, Gavin did so, without uttering a word.

My heart is breaking for the loss Kate and her family are experiencing. I wish I could be there for her, even though we’ve never met. She’s asked that in lieu of flowers, Gavin’s fans can show their love and support in other ways. In Lieu of Flowers Part 1 and In Lieu of Flowers Part 2 share the heartbreakingly beautiful stories of the organizations that she reaches out to us to show our support. The first is the Child Life specialist team at the hospital where he received much and frequent care and the second is an organization the supports families during a donor transplant (Gavin’s kidneys were successfully transplanted into a 40 year old man). The third is the ogranization that helped Kate in her early days with Gavin and got her started with blogging.

We had a wonderful experience with our own Child Life specialist at the hospital recently when Sebastian underwent G-tube surgery. I am so thankful I was urged to contact them, I hadn’t known they were there to help us. When my brother Josh died, my parents gave their consent for organ donation and months later we received a letter in the mail stating that his eyes had successfully been transplanted. A man could see because of my brother’s healthy eyes. It was a strange and amazing feeling to know that someone out in the world was walking around with my brother’s blue eyes. Ever since then I have been an organ donor. What do I need with my body after my spirit has left it anyway? I know other families that have also found great comfort using the Caringbridge site that Kate started on during their experiences with life threatening health situations too. It is a life line for many. And I know that even though it wasn’t a specific site for me when I started, the blogging community brought (and continues to bring) me so much support and even new friends. I feel connected with all of these organizations. I love that Kate has invited us to show our support in such meaningful ways.

How will we Pay it Forward for Kate and Gavin, aside from the above? Sebastian’s 5th birthday is coming up. There are a few charities that have helped us so much since we have lived in Toronto. I always want to give back but sometimes it’s not financially viable for us. We are celebrating Sebastian’s birthday at school with a puppet show party. For those school friends that want to get him a gift, we are asking they donate to one of those charities in Sebastian’s honor instead. We are so thankful for all of the support we get from folks far and wide. We hope that we can Pay it Forward to Easter Seals, Ontario Federation for Cerebral Palsy, Three to Be, and Epilepsy Toronto.

For Gavin.