Thursday, February 28, 2013

Small Steps, Incredible Journey

This week I will run my first official half marathon race.
  • Saturday, I put in 13.2 miles and on Sunday, my “Race Husband” followed up my practice run with a foot massage.
  • I have carefully washed all my tech shirts and my running tights are hung up to dry.
  • I’ve packed my race outfit and I’m almost done with a seriously rad playlist.
All the preparation is complete, but it’s still hard to believe that I am runner.
I started running just about two years ago. There were several reasons I decided to get in shape in 2011, but perhaps one of the first motivators was a surgery I had in December 2010.

Thursday, February 21, 2013


Twelve years ago at my 20-week ultrasound, I was informed that my baby had at least two serious birth defects. The maternal-fetal specialist that delivered the news had no bedside manner and completely lacked compassion. His recommendation was that I terminate my pregnancy.  I walked out of his office that day and never saw him again.  

Eleven years ago, when Peter was only six months old, a developmental pediatrician informed me with absolute certainty that Peter would never eat, chew, or swallow.  She was 100% certain that she was right.  I never saw that pediatric specialist again.

A few months ago, I encountered yet another specialist with a crystal ball.  This Harvard-educated doctor had never met Peter until the day of his appointment but was apparently able to assess everything necessary to predict his entire future.  I will not be seeing her again.

Peter is followed by 8-10 pediatric specialists on a regular basis and has had appointments and evaluations with countless others.  The specialists that regularly care for Peter are the ones who never take away hope and never speak in absolutes.  They are the doctors and surgeons that treat me as an equal part of Peter's medical team, take the time to listen to my concerns, admit there are no certainties, and enjoy watching Peter grow and develop. Peter's team of specialists take pride in his accomplishments, value our family, and use their knowledge and expertise to open doors rather than close them.  The specialists that haven't lived up to these expectations are not part of Peter's medical team.

Sadly, fewer doctors are choosing to go into pediatric specialties.  This is creating longer wait times to secure an appointment and fewer choices for parents of kids with complex medical needs.  What if I had not been able to secure second, and in some cases third, opinions in the above scenarios?  Would Peter have even been born? Would I have invested the time in therapy that enabled him to learn to eat?  While access to care is paramount to Peter's survival, the ability to choose who provides his care is equally important.  No matter what the future of healthcare provides, I hope that parents of medically-challenged children retain this right to choose.

Sunday, February 17, 2013

Grateful Sunday

I am grateful for the many surgeons who gave of their time and skills to give me the opportunity to have a more comfortable adulthood.  The long term reward for undergoing so many surgeries throughout my youth is felt every day in better breathing, better vision, better hearing and a stronger more functional physical body.  One of my surgeons told me when I was 8 years old that one day I would thank him (I did not realize as a child going through the surgeries what the reward could possibly ever be).  Now, 36 years later I understand and appreciate their efforts. 


Sunday, February 10, 2013

Thursday, February 7, 2013

The In-Between

Hi! My name is Sabrina, I’m 23 years old and I was born with Pfeiffer Syndrome (Type 1) as well as a congenital heart defect. I have had 21 surgeries. I'm currently in my 3rd year in university, majoring in Health Psychology. I have been with CCA since I was 16 years old and I've enjoyed every second of it! Writing is one of my passions so I'm very excited to be a part of the CCAKids Blog! 

As I sit at my desk, take a look around my room and see my two cats sleeping on my bed, I can’t help but smile. It’s been quite the journey and it’s not over yet...

This school year started off very differently. Instead of moving into a dorm room, I was already all unpacked and settled in my one-bedroom apartment. Funny how, even though I was glad not to be in rez anymore, I still couldn’t help but take a walk to campus on ‘moving day’ to see all the new students. It was such a weird feeling to watch from afar, parents and students unloading their cars and bringing boxes into their rez building. Not too long ago, that was me...

I never anticipated how different things would be, living off campus. Sure, there’s more freedom and I get to have cats... but the biggest thing is; it feels like I’m ‘home’. I now realize why I was never really happy in rez. It just never felt like ‘home’. It’s hard living somewhere for 8 months where you feel like it’s just a temporary place, like you can’t get too comfortable, because before you know it... you’ll be moving out again.  – Don’t get me wrong, there are advantages to living in rez, but for me personally, I just never felt like I could ‘settle in’ and truly be happy there. I guess it’s because all my life, I had always lived at home and gone to school. I liked the feeling of coming home after a long day at school. I never got that feeling when I was living in rez.

Alyson and I at BU graduation. It'll be my turn in 2014!
Another big change is not having my best friend Alyson here. We met in our first year at BU, she lived just down the hall from me. I remember walking by her dorm and thinking ‘hmm, I wonder who lives in this room”... little did I know, that this person would become my best friend and amazing roommate. We went through everything together. When she graduated in May, it was bittersweet. I was so happy for her and so proud; but at the same time, I was sad knowing she wouldn't be back this year. She’s off in the real world now and I’m still here, continuing my long journey at BU. (Luckily we have texting and Skype to keep in touch!)

Watching your friends graduate, makes you think of your own time-line and where you should be in life. It’s hard not to compare yourself to others, thinking “I should be on that stage with them, I should be done university now too”. Part of me wishes I could say: “this is my LAST year in University! Yay!” But that is not the case. If all goes well, then I’ll be graduating in May, 2014. Some of you might be thinking “well that’s not too bad, it’ll go by fast!” – but since I started this journey in 2009, sometimes it seems like I've been here forever.

I tell myself to try to stay focused. This is MY journey... no one else’s. Living in my apartment, I am constantly reminded that I am on my own. It feels liberating, choosing my path in life, doing what want to do. I started off the school year better than ever... I bought my textbooks in August and read ahead. I am truly determined to stay on top of things this time. What’s changed? I now have a future plan. I know where I want to go after Bishop’s... and I cannot wait! I’m sure some of you wondering “okay so where are you going?” – well I won’t say yet. Only my closest friends and family know my next step. I won’t say it yet because I feel like I’ll be jinxing it somehow.

Life has no guarantees. Who knows what’ll happen after I graduate? At least I know where I WANT to be and I will work hard to get there. The beauty is that I still have some time before then. This is my in-between year. While part of me is anxious to get out of here, the other part of me wants to enjoy this stage of my life, where it feels safe. Everything is calm at the moment and I’m happy right where I am (and with my 2 adorable cats who give me so much love!). It is weird knowing that when I move out of this apartment... I’ll be going off into the real world...

I don’t know what this school year will bring, but I do hope that it will be my most successful year yet. I’m excited for 2013 because I’ll be a bridesmaid in 2 weddings!!! I feel so blessed to have such loving friends and family who have asked me to be a part of their special day. Love you girls! :)   

So BU 2012-2013... bring it on!! I’m ready for this.

Guest Blogger Sabrina Robineau wrote this piece anticipating the beginning of the college academic year 2012-2013.

Sunday, February 3, 2013

Breaking Free of the Braces!

This Sunday I'm grateful for Peter's beautiful new smile.  He had his braces removed last week after wearing them for only a year and a half.  It's amazing to me how quickly they make a difference and how fast they can be removed now.  Back in my day braces were for high school and you were lucky to get them off in time for senior pictures!

I was particularly eager for Peter to have the braces removed because of recent concerns about his speech.  Increased drooling, difficultly swallowing, poor articulation, and sleep/apnea patterns are primary indicators that let us know more jaw reconstruction is necessary.  We are hoping to hold off on surgery for another year or two, but it is always hanging over our heads as to when the time will come.  All those concerns made me anxious and hopeful that Peter's speech and increased drooling would improve once the braces came off.

Much to my relief, Peter's speech was better without the braces.  His freedom was short lived, however, once he was fitted for retainers.  Unfortunately, his speech with the retainers is even worse than it was with the braces.  If Peter didn't have the craniofacial hurdles to overcome, he would wear both retainers 24/7 for the next month.  Because his mouth is so small, we are only having him wear the top retainer at school.  It is very challenging for Peter to speak and breathe while wearing both retainers at the same time. He is able to manage it while sleeping though.  Eventually (after about 1-2 months), he should only need to wear them both at night and be appliance free during the day.

It was so fun to see Peter smiling from ear to "ear lobe" (wink, wink) as he left the orthodontist without his braces.  Our orthodontist has been fantastic in adjusting Peter's treatment to accommodate his craniofacial anomalies.  The entire experience, although far from over, has been much smoother than I expected.  The results?  Well I may be prejudiced, but I think he looks quite handsome!

P.S. Peter and I had a giggle fest while I was taking a picture of him for this post.  I said, "You are cracking me up with your posing and cheesy smile."  His reply, "Yeah, that's what I was going for." Another thing I'm grateful for.....  such an amazing son that makes me laugh so much!