Anyone see this coming?  A week ago, we were living our lives.  Our kids went to school.  Madi tried out for Badminton and Ali went swimming with her class.  I headed into city with a friend to do an agility seminar.  We knew that we had to be careful, but I think even then most of us really didn’t understand the scope of what was coming.  For weeks Jason and I have been reminding the girls to practice good hygiene, we’ve been considering taking them off the bus and wondering when or if we would need to start isolating Ali. 

Suddenly the world changed.  In the blink of an eye we are all living in isolation.  We are afraid to take our kids out of our houses, there is no school or activities and everything is closing.  Every time I get notification that something that I have come to depend on is shutting its doors, a little piece of me panics.  There is so much uncertainty and we are now all tasked with the responsibility of keeping the people around us alive.  We need to work together to keep the people around us that are more vulnerable from getting sick and suddenly this well-oiled machine that Jason and I have become in order to keep Ali alive needs everyone’s help to keep her safe. 

In our household we are not strangers to hiding from viruses (or scary near-death experiences for that matter).  In the last 10 years, we have become very efficient at keeping Ali safe and at avoiding hospitals, doctors and calling 911 (which sometimes is quite the miraculous feat),  This is different and I can’t say it enough, we can’t keep her safe alone this time.  We are painfully aware that in many countries, they have had to make the decision to stop treating patients with comorbidities.  This means Ali.  This means that if Ali gets sick, they may not treat her if they don’t have the capacity and we know that without a lot of support this virus could kill her.  It’s exactly the kind of illness she struggles the most with.  So, when you’re inviting your neighbor’s kids over for a playdate,  huddled in a group outside your office socializing or going to your regularly scheduled, non emergent appointments or classes please remember that despite the fact that you’re not worried for yourself, you could be killing your parents, your child’s teacher, the lady that helped you at the grocery checkout,  one of the many workers who are essential for keeping us all fed and warm or Ali. I know it’s hard and I know it’s scary, but we need to do this together.  Please remember how vital social distancing is.  When this ends and we’re all safe, you will be so glad you did to still have all the people you love.

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 27^th 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.

Before I post this, I want to say that Ali has had some incredible teachers and TAs.  She has been very lucky to always feel loved and valued at school and we are thankful for that.  I know that it’s tough to deal with parents of children with special needs, like our children we are all different and some of us need more guidance than others but we all need to feel like people see potential in our kids.

To The Teacher That Told Me That She Would Fall Behind Immediately,

It was the beginning of a new school year and I brought my beautiful daughter to your classroom to meet you.  She was so excited to start her school year and you had an amazing opportunity to get to know an incredible little girl.  This is a child who has beaten the odds several times just by surviving.  She has so much to give to the world. After talking to you for a while and telling you all about how amazing she is (because you looked doubtful), you told me that you expected the gap to open between her and the other children “immediately”.  I was shocked, not because I didn’t already know that but because you actually said it.  I ignored it.  You said it again!  Those words have gone through my head several times this year because at that moment I lost faith in your desire to teach my daughter, I doubted that you would find value in spending time with her and I spent my year worrying that you were simply pushing social skills and not giving her the time she deserves to actually be educated.  I didn’t say anything to you.  I just finished the meeting, tried to smile and left with my beautiful, smart, capable daughter and I cried on the way home because we live in a world where even teachers prejudge children with special needs.

But the thing is that every child deserves to come into the classroom at the beginning of the school year and show their new teacher what they CAN do before the teacher decides what they can’t.  It doesn’t matter if they have special needs or not, you teach because you want to help little people learn and some little people learn more slowly or differently but they all have strengths and you should be building on that, not deciding before they even set foot into your classroom what they can and cannot do.   You misinterpreted my pride and excitement about all the things that she can do as a lack of understanding of where she stands academically and that’s not fair.  I know exactly where she stands cognitively, I’ve been her mom for 8 years and I’ve struggled along with her to help her learn and develop.   I’m still proud of her.  Every parent gets to be proud of their child, it’s one of life’s biggest joys and in my case it isn’t dependent on cognitive ability and it’s not your job to squash that before you even get to know a child.

You reminded me mid-way through the school year that getting her to a point of basic literacy was going to be hard.  Thanks for that.  I think you need to understand that if families like mine backed away from things that were tough, our children wouldn’t get very far in life.  We just don’t have that option. You need to be on our side, building our children up and helping them reach for the stars no matter how difficult it is.   I know it’s just one year for you and yes, I know it’s a lot of work but you have the opportunity to have so much impact on these little people with challenges.  I sincerely hope you always take that opportunity because part of what helps children flourish is when people around them believe in them.

So in closing, I appreciate all the effort you made to teach her.  She really liked being in your class and she had a great year.  We are so incredibly proud of how far she’s come and we know that it’s because of the village around her that helps push her forward and the amazing people who believe in her despite her differences and the path that she’s on.  We know that people work very hard to help her succeed and we are grateful every day for people who love her and encourage her.  I don’t know if you ever saw her for the amazing, capable, intelligent little girl that she is but I trust that you know what a privilege it is to be part of her story because she’s going to do great things with her life and we are all fortunate to be part of that!

Sincerely,

A Very Proud Mom

I honestly thought we’d come to a point in time where people realized that sharing jokes and memes that use the word “retarded” is in extremely bad taste. But again, there is a joke circling on social media and via email that uses the word retarded in a way that is offensive and hurtful. I don’t know if it’s ignorance or lack of education but I don’t understand how people can press “share” or “forward” on something that furthers the stigma that families like mine spend so much of their lives trying to change. As hard as we try as parents to educate, there continues to be a stigma attached to people with cognitive impairments and when you use the word “retarded” as if it is synonymous with stupid or in any way other than that in which was intended, you propagate that stigma.

Retarded is having to sit through parent teacher interviews as the teacher tells you all the things that are too difficult for your child, even though she works on them every single night at home. Retarded is having to explain to your daughter why a friend didn’t invite her to her birthday party even though she really wanted to go. Retarded is being so proud of your daughter’s reading that you are ready to burst then seeing the pity in people eyes when you show them a video and they can’t figure out exactly what you’re proud of. Retarded is watching people stare at your child and make rude gestures or laugh and then turn away. You know what retarded isn’t? It’s not funny.

Being retarded is not a joke and sharing jokes that make light of it are hurtful and detrimental to families like mine who fight like hell for their children to have better lives. Not to mention the fact that sharing these sorts of “jokes” shows us that you think that our child is less. My daughter meets the medical definition of the word retarded. She is bright, beautiful, happy and determined, she deserves to be seen for what she is, not to be made to feel inferior by people who choose to use the word retarded as if it is funny or in a derogative fashion. You can say it’s a joke all you want, but you know what? It’s not a joke to me. It’s my life and worse yet, it’s my daughter’s life and she will fight and struggle every step of the way as she grows and tries to earn respect in the world. You set her back when you share those jokes.

The word retarded is so ingrained in our culture that people don’t even realize how much it hurts but I can assure you as I sit here typing this and wondering how my daughter is ever going to find a place in this world where she is safe from this kind of disrespect, that it is very, very hurtful.  She is not stupid.  Her brain simply works differently and it takes her more time to learn but she is strong, capable and persistent.  She overcomes everything that is put in her path.  She has so much to give to the world so let’s try to make this journey a little easier and stop using words that make her path more difficult.