Today is Costello Syndrome Awareness Day. It is the birthday of Dr.Costello for whom this syndrome that sometimes pretty much takes over and controls our lives is named. As a coincidence, January 27th is also my mom’s birthday (happy birthday Mom). I’m sure she won’t mind sharing her day with Ali and all of our amazing Costello family because being the wonderful grandma that she is, she is stuck right in the middle of Costello life and I’m sure both her and my dad (Hi Dad) find that their lives are really affected by this syndrome as well. So I have decided to come out of blog hibernation to talk about my amazing daughter, our Costello family and what it’s like to live this life.
Let’s start with Ali – that amazing little ball of sunshine that literally lights up the room when she enters. In the spirit of Costello Syndrome Awareness, I’m going to try to tell you how CS affects every part of her life. When Ali was born she was blind, she needed a feeding tube for 100% of her daily intake, she threw up at least 10 times a day for two years, she didn’t sleep and hated light, noise and touch. She was developmentally delayed and it seemed like she was the grumpiest child on the planet (and rightfully so I suspect). She had several significant heart defects and worst of all a significant risk of some scary childhood tumors. Ali is now 9. Although she can see now, she has a cortical vision impairment that leaves her with low vision. It is not correctable and although she wears glasses she still needs lots of modifications to get through her day. She no longer tube feeds but eating is still a work in progress. She struggles to chew and bite because she has structural defects in her jaw (although she thinks that having teeth that touch might be overrated) and for some reason she can’t manage to coordinate nose breathing with biting, chewing and swallowing. She suffers from serious hypoglycemia that is somewhat controlled by daily injections. She still has orthopedic concerns, neurological concerns, heart defects, endocrine abnormalities, cancer risk and a pretty substantial lack of clarity when she attempts to communicate. She has had 4 major surgeries including one on her spinal cord, one minor surgery and more then one “near death experience”. She is a “frequent flyer” at three hospitals and an “occasional flyer” at one more. Although she is making progress academically, she works very, very hard and progress is slow. She has a modified program at school and is learning to read and spell but she is falling further behind her peers. Math is her nemesis and she really struggles with anything beyond counting and simple addition/subtraction. She used to love school but we have noticed that she is becoming very anxious and it’s starting to be a bit of a fight with daily concerns about behaviour. All this aside, she is doing things that we thought would never be possible. She reads, she spells, she dances, she plays in the snow and climbs hills to toboggan down, she skates, she runs and she eats pizza, cheeseburgers and about a million hotdogs! She’s come so far from that blind, grumpy infant with a feeding tube. Most of all she lights up a room like nothing I’ve ever seen before.
She is my hero. Her life is hard and I think sometimes we all forget that because she’s happy and loving and resilient but when I actually get a minute to sit and think about what it might feel like to be her, it kind of takes my breath away. Everything is so much harder for her. She struggles to move around, to see, to communicate and even to eat. She watches as her sister and her classmates grow, gain independence, play sports, have sleepovers, meet friends to bike ride, all those typical things and she is so far from any of that. We go out in public and while people still seem to stop to say “Hi” to her everywhere we go (she’s a star), she is starting to notice that people also stare at her and sometimes make comments. She uses up so much energy at school each day that she needs to shut herself in a dark room when she gets home to reset. Costello Syndrome will never define her but it is a huge part of who she is, it’s a huge part of who we all are. That’s why awareness is so important, I want her to be proud of exactly who she is, Costello Syndrome and all.
We are a family and Costello Syndrome affects us all in such a huge way. We love Ali. We want her to be happy and healthy and as successful as possible, we will do what we have to and it’s not often that I’ll admit this but in the spirit of Costello Syndrome Awareness, I will today – it’s really hard. We`ve all sacrificed, even Madi. Madi is smart, athletic and most importantly of all, very kind and sometimes I wonder how she got that way with two parents who have spent a lot of time literally just keeping her sister alive. We try so hard to make her life “typical” and I think as Ali gets older, we are doing better but I know that Madi has made sacrifices and lots of them yet she continues to be pretty exceptional if I do say so myself and I feel very fortunate for that! We have also been blessed with extended family that accept Ali for exactly who she is and whether it`s from two hours away or across the country, my family finds a way to be there for us when we need them.
We also get support from our incredible Costello Syndrome Family. These amazing people with Costello Syndrome seem to be surrounded by the most amazing families. I see some of the things that the families of kids with CS go through and I am in total awe of their strength and ability to just keep going – heart surgeries, brain surgeries, cancer treatments, endless hospitalizations and worst of all loss and they somehow manage to continue on when I`m not sure I could. They also manage to be there for eachother, no matter what the circumstances are or how much they are struggling themselves. It is truly a family and one that we are so thankful for. They are so strong and so loving and as much as I wish things had been different for Ali (because I really, really do), I am glad that I get to know them and watch their journeys because they are so inspiring for so many reasons.
Today on Costello Syndrome Awareness day I am thankful that Ali is here and that she continues to amaze us with her accomplishments, it is not lost on me that many families with children with CS don`t get to watch them grow up. I am also thankful that I have three partners in this crazy life (Jason, Madi and Ali) who all manage to keep on going no matter how crazy things get. There are so many days when I am totally done and I keep fighting because they do. This is not an easy life, it`s a really challenging syndrome but there is so much to be thankful for. Ali changes so many lives and I am so lucky to get to witness that.