In less than one month, on September 26, my family and I will be supporting SickKids Hospital in Toronto by taking part in The Canaccord Genuity Great Camp Adventure Walk. While we don’t have a personal story to share, we have a connection to SickKids Hospital nonetheless, and my husband and I have committed to supporting SickKids Hospital since our oldest son Kyle was born. We are thankful that such an amazing institution exists in our city and that it provides so much help for those in need. My family created a team as part of the walk, Camp Fitz, and I hope you can support us in raising money for The Possibilities Fund at SickKids Foundation.
I am beyond grateful that Nicole, a mom of two beautiful kids, has graciously agreed to share the story of her daughter’s time in care at SickKids Hospital. I hope that after reading this story you will agree that we’re so fortunate to have access to such a great organization and I encourage you to support my team, Camp Fitz. You can donate HERE!
Reese’s Story:
Prior to October 2010, if you had asked me if the word “normal” was politically correct, I probably wouldn’t have given it a thought and responded “yes”. However, now I know that the correct answer is “no”, and the word “average” is much better suited for all things.
This is the big story of my little daughter, Reese. Reese was born on October 18th, 2010 in the early evening. I had an uneventful pregnancy and for the most part delivery; until Reese’s heart rate started to drop while pushing. The nursing staff called the doctor and he said her head was stuck and he had to use forceps to get her out. Three pushes and simultaneous pulls later, and she was out. They laid little Reese on my chest. She was chubby and beautiful….minus all the junk on her, of course. Then the nurses took her to do their usual weigh-in’s etc. That is when our lives changed. The nurse who was measuring her shouted at me, “Nicole, her arms look small … legs too”. I looked at my husband who was standing over me while I was getting — shall I say, put back together — and he gave her this look I’ve never seen before nor hope to again. That nurse was quickly ushered out. My husband Joe told me not to worry about it. But they brought in a Pediatrician who wasn’t sure about her arms and legs and the following morning, she ordered an x-ray which may be supported by a medical imaging management platform.
The rest of that night was a blur. I remember it as if I was a ghost or something that couldn’t be heard. All of our family came in and held her and said how beautiful she was; no one was talking about the fact that there could be something different about her. I’m sure we mentioned it to our parents at the very least, but it was as though they didn’t hear. Then I almost seemed to forget. Everyone left and Joe and I spent our first night as parents with a newborn in the hospital. It was the next morning that Reese had her x-ray’s and later that day another Pediatrician came in and said she wanted to send our x-ray’s to The Hospital for Sick Children, as their radiologist would be more familiar with reading babies x-rays. However the Doctor suspected that Reese had a genetic, skeletal condition called Achondroplasia. In other words, she was a Little Person.
A few weeks later we meet our Genetic Team at Sick Kids. They explained a lot of things to us, but in a nutshell, Reese’s bones in her arms and legs are below average height, her torso is average and her head size is above average. They said that the average height for a female Little Person (LP) is 4 feet and male is 4 and a half feet. There are also health concerns that can go along with being an LP and her gross motor will be delayed (rolling over, sitting up, standing, walking, running etc.). Following the meeting we put the wheels in motion to start testing.
Our new life was crazy; we had a new baby and added challenges but we loved Reese deeply. We decided it was best to help her in any way we could. For the first two plus years we were at Sick Kids often and the staff there were wonderful. As a new parent with uncertainty and in unfamiliar territory, we couldn’t have been more thankful to have our lifelines at Sick Kids. Our Genetic team made us feel comfortable with our new “normal” and they suggested many tests to make sure Reese was thriving and that there wasn’t any complications. Little People often have sleep apnea, either obstructive (usually a nasal blockage) or central (meaning the brain is controlling the apnea, which Reese had). Spinal compression with hydrocephalus is also common. Reese had both of these complications. The apnea she thankfully grew out of, but after two years of monitoring her with sleep studies and sedated 90 minute MRI’s every 6 months, the compression was getting worse and at risk of cutting off all of her nerves in the spine and lower skull. This lead to our worst nightmare, neurosurgery. Our Neurosurgeon likened the complexity of the procedure to walking across the 401; it is possible to do, but you must be very careful. So, when I was 8.5 months pregnant with our second child; Reese who was only 2.5 years old had her decompression surgery.
I’m happy to tell you everything went very well; clinically perfect as our Neurosurgeon put it. But I want to express upon you how very difficult this time was for us… and for OUR BABY. Reese is our reason for living… and we were expected to hand her over , with all our hopes and dreams to the medical staff. To say it was the hardest thing I will ever have to do is the understatement of my life. However, EVERYONE at Sick Kids truly was amazing … I can’t even put my gratitude into words. I don’t think there is a word in the dictionary that would express my love and eternal gratitude for the staff there and how they saved our daughter. I really don’t know how they do it. I had a very hard time not crying every time I was there. I almost had to build up a tolerance. You see things while at SickKids. Heartbreaking things. But every day, the doctors, surgeons, nurses, radiologists, volunteers, cafeteria staff etc… show up with a smile on their faces and do their very best to help a child. Everyone in that hospital knows that you would rather not be there, but you are, and you’re making the best of YOUR situation. Because it is your situation. And someone always has it worse. So all of the parents smile when you pass them by. The volunteers and staff “ohhhh and ahhh” over how cute your child is. Everyone asks regular parenting questions and you exchange stories of why you’re there and why you’re so thankful to be there.
Our “normal”.
Given the extremely emotional situations we’ve faced at SickKids, it’s a very positive place. The culture is one of providing the utmost respect and love — for the children, the parents and the staff. I am a Sick Kids parent and I am very lucky and proud to say that. It’s a badge of honour for me. So, when our appointments ramp up again in a few weeks (thankfully we only go a half dozen times a year now), I don’t hesitate to hold my head up and smile. Because I’m genuinely happy to be there. And we’re VERY lucky to have such an outstanding hospital.
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Show your family’s support and gratitude for SickKids while having tons of fun during a day full of camp-like activities. Join me and my family and countless other by taking part in The Great Camp Adventure Walk to benefit SickKids. Enjoy a full day of adventure, designed so anyone and everyone can participate. Challenge-by-Choice event lets you to challenge yourself to walk 5 km, 10 km, 15 km or 20 km with opportunities to stop at fun “campsites” (activities) along the way. SickKids goal for 2015 is to raise over $2 million and with your help, they can do it. All donations go directly to The Possibilities Fund at SickKids Foundation. For SickKids, it’s the most flexible source of funding, and therefore one with the most potential to transform children’s health. Register and use promo code ‘social‘ to receive a $10 discount off The Great Camp Adventure Walk registration fee!
Influence Central The Great Camp Adventure Contest
Enter for your chance to win 1 of 5 $100 donations to a team of your choosing, and an additional $100 for the winner themselves!
Enter below:
The Great Camp Adventure Walk for SickKids Promotion Contest
Disclosure: I am part of the Canaccord Genuity Great Camp Adventure Walk for SickKids campaign with Influence Central and I receive special perks as part of my affiliation with this group. However, I chose to donate it all back to SickKids. The opinions on this blog are my own.
I will be entering to donate, as well as donating.
Thank you for your support!
What an incredibly touching story.