It was mid-June and our short Canadian summer was about to make an appearance. It’s no surprise that my husband and I anxiously agreed to an annual cottage weekend in the Muskokas (the Hamptons of the North) with close friends who we only see twice a year. A weekend that I always look forward to when the snow is still falling. That Friday I also received my weekly email from the MAGIC Foundation, a non-for-profit organization dedicated to supporting children (and adults) who have growth-related disorders. The email included a reminder about their 21st convention which happened to be on the same weekend.
A number of parents had shared positive experiences about MAGIC and the convention, however I wasn’t sure if we really needed to spend the money travelling, or lose our precious cottage time. After all, our 2 year old daughter Sienna was too young to be able to enjoy the weekend or interact with the other kids. Plus we were still in a transition/survival mode with a 2 month old baby girl, and my new business launch.
As I put Sienna to bed that night, my mind swelled with endless reasons why we should travel south to the suburbs of Chicago versus north to the beautiful Muskokas. For one, our daughter was only diagnosed with Russell-Silver Syndrome one year ago, hence her condition was still new to us. While I had read the Guidebook (which was beyond valuable in itself) I knew we had a lot to learn. This convention would help guide us on future decisions that would change Sienna’s life and our own. Plus the chance to meet other families who were like us, and who had children like our daughter, was a rare opportunity. I know Sienna is a special girl, but sometimes I forget just how special she is; given that she’s a mere 1 in 100,000 odds it was unlikely that we would cross paths with anyone like her close to home.
So one night, my husband and I agreed to opt out of the cottage and in for Chicago. Little did I know that it would be the first of many MAGIC conventions to follow.
We arrived in Lombard, Illinois the afternoon prior to the Convention presentations, but the fun had already began. A large ballroom in the hotel was filled with families and little ones, many as tiny as Sienna. As I watched the little ones whiz around the room smiling from ear to ear I had to fight back the tears. I knew that each and every one of these kids struggled in some way; be it with self-esteem, speech, tube feeding, their daily growth hormone shot, developmental milestones – but not today. Today they were not the smallest one in the room, nor were they attracting inquisitive and uncomfortable glances from strangers. They may still have needed their nightly needle or a bolus feeding through their G-tube, but so did their friends. Everyone here was just…like…them.
For our first year we decided to take our newborn but leave Sienna in Toronto with her grandparents; we had no idea what to expect and thought she was still a little too young to truly enjoy it. Yet, once I witnessed all the incredible activities on the go – from rock climbing walls to talking robots – my first thought (and regret) was not bringing our daughter for what was about to be a memorable weekend. A weekend for her.
Two things I now know for sure: we will be here next year and Sienna will be in tow.
During the course of the weekend we were frequently approached by other families. Perhaps we looked lost and overwhelmed, or they wanted a closer look at our 6 week old baby. Whatever the reason, I am grateful for their introductions and words of wisdom. What started out as a simple hello and baby talk, turned into tear-jerking conversations. One mom (who has been through it all already with her 16 year old RSS son) encouraged my husband and I to put ourselves first saying “Sienna needs you two to be strong together so that you can be strong for her“. She knew how hard it is and will continue to be: all the appointments, the weighing, the worrying, and the unknowns can be all consuming and not leave much room to take care of your own relationship. After exchanging stories, another mother assured us that “it gets better“. Whatever “it” might be at this point in time. These were all things we needed to hear as new parents.
Despite what I already knew about RSS, prior to the convention I would simply chalk it up to size. “Sienna will just be smaller than other kids her age” was how I simplified and summarized the genetic condition to others. But RSS is about SO much more than just height and our family and friends should know that. That’s why I decided to write this post on Russell-Silver Syndrome. Sitting in on the presentations and speaking with the RSS experts first-hand, opened my eyes to what we were really dealing with – everything from metabolic complications to reproductive challenges. RSS was anything but simple. I guess, after a rough start, I subconsciously blocked out the complexities or chose not to share them in an effort to feel ‘normal’.
We left the Convention with so much. Too much to summarize in this post, and much of it, too hard to put into words.
If I had to pick three things that stuck with me it would be these.
Feed them, but not too much
As a Certified Nutritionist who works with moms to help their little ones thrive, I was keen to hear what the RSS experts had to say about feeding. We know kids affected by RSS have no/limited appetite and some will actually starve themselves to avoid the discomfort from eating. But when a parent hears that their little one is at the bottom of the growth chart or that he/she is not eating enough, they will do anything to fix it – we interpret our child’s failure to thrive as a personal failure. So we go home and pull out all the tricks at the dinner table to get our child to eat. Sure, our kids may gain weight and a few points on the growth chart, but they lose much more. RSS children in particular require a delicate balance of weight gain due to a higher risk of insulin sensitivity and Type 2 Diabetes. So while we need to ensure they are getting enough of the right foods and nutrients (complex carbs, healthy fats, and proteins) we have to respect their body’s limits and create a positive relationship with their food.
Treat them their age, not their size
My little one, Sienna, is over 2 years old yet currently prancing around me in a 9 month sized outfit. So it’s no surprise that strangers in the grocery store often comment on how advanced she is for ‘her age’. People who do not know Sienna assume she is much younger, and interact with her accordingly. They insist on helping Sienna put on her shoes, zipping up her backpack, or not pushing her to engage with what are age-appropriate activities. Their actions are innocent and kind, but not helpful. Those that DO know her (including myself) make the same mistake. Parents at the convention shared the same observation. Our little ones may be a meager 20 pounds at 2 year of age, so it’s easier to throw them over our shoulder to get from point A to point B. Yet, for the sake of their own development and independence we need to look past the size tag on their clothing and treat them their age.
Encourage them to dream big
An hour before we departed for the airport, we unintentionally ended up in a room with a panel of teenagers (all affected with RSS) who were revealing what life was like in their shoes. A room full of new parents probed on how RSS has impacted their lives, and their responses were unforgettable. We were all surprised to hear that one of the young men was on the wrestling team in high school (note: those with RSS have extremely low muscle tone and muscle mass). He proudly said he lost every match he competed in. To him ‘winning’ wasn’t about beating your opponent. After all, he was 20% lighter than the other young men he competed against. Instead, winning was not letting his opponent pin him down, and on those terms he has yet to lose a match. In his coach’s words “pound for pound, he was the toughest guy on the team“. His attitude and tenacity are inspirational because that is how you win in life. That is how Sienna will ‘win’.
It’s not about how big our kids are or about them winning every match. It’s having the courage to move forward when the odds are stacked against you, and looking adversity in the eyes saying “today you won’t pin me down.”
As Mark Twain once said, “It’s not the size of the dog in the fight, it’s the size of the fight in the dog.”
See you next year MAGIC!