As most of you know, we have a world class children’s hospital on our doorstep. Hopefully most of you haven’t needed it, other than the rare emergency trip for croup or a nasty fall. That had been my limited experience with it with Gabe and Lacey, until we had Bella and life changed for us. Fortunately for us, and so many other people Canada wide, the Stollery has been there all along the way.
For those of you who don’t know, my youngest daughter was born in 2011 with a very rare syndrome called Langer-Giedion sydrome. You can read more on it here. Basicly it’s a very rare syndrome, that includes small stature, exotoses on bones (bone on bone tumors) that can affect mobility and cause pain, and can grow on bones, spinal cord, etc. They also typically don’t grow hair normally, have different shaped eyes and noses, have low muscle tone, developmental challenges, intellectual disability and hearing problems. I’m sure I’m missing some stuff, but those are the basics.
Bella was born at the Grey Nuns Hospital on September 3, 2011. She was almost immediately taken from me, rushed to the NICU and held there. I knew as soon as I saw her something was wrong. I wasn’t doing great either, and the nurses wouldn’t let me see her for what seemed like a very long time. I think it was about 6 hours in actuality, but it seemed like a lot longer. When I did get there, I could see that she had very strange eyes, with no white showing at all… just black. She had extra digits and the nurses told me she had a heart murmur, which I found out later was 3 substantial holes in her heart.
Within days an amazing geneticist came to see us, on a Sunday afternoon, to have a look at her and give us a preliminary diagnosis. His initial diagnosis was for something else, called Smith-Lemli-Opitz Syndrome. We were devastated.
The next 4 weeks were a blur, me living at the hospital, John bringing the kids back and forth and trying to keep the fort down at home. She wasn’t able to breast or bottle feed, so I pumped and she was tube fed for a few weeks. We finally got her to bottle feed a bit which was such an amazing thing, and yet something that with the other kids I just took for granted. Feeding your child seems like something that should be natural, but it wasn’t for us.
Eventually we were discharged from the Grey Nuns, and our experience with all of the amazing doctors at the Stollery began. In her short almost 3 years, she has had specialist appointments with Cardiologists, an Otolarynologist (ear nose throat doc), Geneticist, Orthopedic Surgeon, Neurologist, Plastic Surgeon, Occupational Therapists, Physical Therapists… she’s had EKG’s, x-rays, ultrasounds, ECG’s, MRI’s, echocardiograms, hearing tests… the list goes on and on. This girl has been through a lot, and the doctors at the Stollery have been nothing but compassionate and caring when things have been really hard.
So far Bella has had 7 surgical procedures and been under anesthetic 5 times. She’s had major dental surgery, 4 sets of tubes in her ears, plastic surgery on her pinky fingers and her thumb and most recently she had an open reduction hip surgery which required 6 weeks in a spica cast.
Although she’s been through a lot, this girl is happy and thriving in so many ways. I give so much of that credit to the care that we’ve received at the Stollery. I have had to advocate for her, but when it has been necessary, she has had immediate and amazing care.
She has a long road ahead of her though. She’s nearly 3 and can’t walk and has very little as far as verbal communication. She can’t hear well. She will likely have ongoing orthopedic surgeries. She may never walk. She’s frustrated, we get frustrated. She looks like a 1 year old. She wants to run in the sprinkler with her brother and sister, but she can’t, and it breaks my heart. As hard as that is, I know that living here she will get the best care possible and will thrive in her own way and in her own time. I’m good with that, because to us, she’s perfect. She’s like a little angel, given to us to remind us that life isn’t always easy. But easy isn’t always best. The hardest lessons teach us the greatest things in life.
John sent me this quote about a year ago, and it sits with me on days that truthfully, just suck.
“She stood in the storm, & when the wind did not blow her way, she adjusted her sails.” ~ elizabeth edwards
We all have bad days. I have them, lots of them. But the last 6 months or so I’ve taken a cue from Bella. I’ve decided that when bad things happen, they teach me something. My path changes, but it changes in a direction that is infinitely better than the one I was on. Bella is hard, really hard sometimes. But to imagine our lives without her is impossible. She doesn’t let surgeries, recoveries, her ‘lack’ of ability get in her way. She whips around on her cupcake car, she yells when she needs to, she gets mad and then moves on, figures it out. Good lessons from a 2 year old.
In order to hopefully spread the word about Stollery Week, I’m going to give away a Sunset Session, to one person who goes to the Stollery website today and donates or shares this so that someone else can donate. Write a note on the post on facebook, letting me know that you donated. If you can’t donate, share the post and tell me you shared it. Share your story, do anything that will bring light to the amazing doctors, nurses and other staff that makes that place run the way it does and you’ll be entered into the contest. Stollery week ends on the 20th, so I will choose a winner on the 21st.
xoxo ~ Karey