Let’s Talk About the “R” Word.

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.

Planting Tulips.

My grandparents were pretty amazing and I was lucky to grow up with grandparents like them.  For the first part of my life, while we lived in Alberta and then Ontario, they lived in Saskatchewan.  Even though we lived far away from them, I have many happy memories of their visits to us and our summer visits to them and a few odd memories along the Yellowhead Highway in between.  They’re all floating around in my head today and I’m honestly surprised by how many there are!  Admittedly, some are pretty foggy because I was a child but some are so, so clear.  Some of the clearest memories  I have are of raising the flag in my Grandpa’s backyard in Regina, he used to let us raise it when we came to visit to signal to everyone that his grandchildren were there.  Eventually, my Grandma and Grandpa moved back to Ontario and they lived about 5 minutes from us.  We had big family holiday meals and Sunday dinners, they watched an endless number of sporting events and school concerts and eventually high school and university graduations and they took great pleasure in helping us when we needed them.   After my parents returned to Alberta, Grandma and Grandpa’s place became a home to go to on weekends from university, it was very much a refuge where we could study for exams, get together with friends or just hang out.  They picked us up from the train station, lent us their car and invited our friends into their home with open arms.  More than once,  they drove an hour to pick me up, bring me to their place and nurse me back to health when I was sick.  Once, they drove my roommate and I home late at night because our train never came and I had a paper due in the morning and they often appeared in odd places to watch Ringette games.  They’d happily drive a couple of hours to watch their grandchildren play a sport they loved or to go for lunch.   It was a hard transition for us when our parents moved back to Alberta and Grandma and Grandpa stepped right in and made is so much easier.

As we grew and moved on from University we always knew that they’d be there when we needed love and support. They travelled across the country to both my wedding and my sisters and they went to Saskatoon to see my first house. They adored my children and celebrated them for exactly who they were.

Today,  my Grandpa died.  I will never forget the animal sounds, the visits to the Regina Leader Post, the Roughrider games or all those $20 bills that Grandpa used to slip me (often right before or after Grandma had slipped me one of her own).  I will never forget the way Madi adored him and how he looked at her with such fascination, the way he used to touch Ali’s feet and hold his hand out for hers while he looked at her with pure joy or how he never forgot to ask Jason how his beloved Roughriders were doing and to ask about the most recent scores.  Last time I saw him, he told me that I was beautiful and how proud he was of me, those are words I’ll always cherish.  As we get older, we often see less of our Grandparents because we move away and have families of our own. But we never forget that childhood feeling of excitement knowing that they’re coming for Christmas or wondering what cool things you’ll do on your summer visit. We never forget raising their Canadian flag, getting lost trying to find them at work or having them chuckle when we once again land our butts in the penalty box. We never forget their kindness or all their guidance along the way and we try to pass the little seeds that they’ve planted on to our own children.  Our grandparents are a big part of who we are.  My Grandpa overcame a lot in his life to become the Grandpa and Great Grandpa that he was and I know that he left behind four granddaughters and five great grandchildren that are so very thankful that he did.

My grandpa used to walk Cindy, our family dog  when we were growing up.  He loved to walk her in the woods. She used to get so excited when she saw him coming.  While he was walking, he’d plant tulips back in the woods for everyone to enjoy.  I bet they’re still there now making people smile just like all the memories that he’s left us with.  Now, Grandpa is with Grandma and I’m sure he found Cindy along the way and together they can plant more tulips – or maybe they’ll just sit back and watch all the tulips they’ve already planted grow.   I’ll miss you Gramps, say, “Hi” to Grandma and Cindy for me and thanks for the amazing memories!

Two Years Since Tubie Graduation Day!

Two years ago today, Ali had her feeding tube removed and while we hadn’t used it for about 6 months, it was still a huge day! I always had a love-hate relationship with her G-tube.

For me, her feeding tube started out as a symbol of failure, not hers but mine. What kind of mom can’t feed their baby? What kind of mom can’t keep their child from throwing up 7 or 8 times a day? In the early part of Ali’s life, I felt like I admitted defeat over and over again. When we put her “permanent” feeding tube in, it felt like we had truly lost the war. I was tired, I couldn’t do it anymore. I needed that fight to avoid a permanent tube to end. What followed was years of a new battle that I fought with myself. How hard to push, where to get advice from and who to listen to when there were experts telling me that my child may never eat. Did we need to take things slow or push her to eat? What kind of diet would stop the constant vomiting? How could we get her to the point that we didn’t need to feed her 24 hours a day? It was really, really hard. Deep down inside, I knew that she’d never, ever eat uand it hurt. But I was wrong in so many ways.

She did eat eventually and suddenly I had a whole new perspective on her feeding tube. In reality, by making that decision for Ali, Jason and I had made the only choice we could. We didn’t give up, we took a really brave step forward and accepted that Ali needed time. We accepted that she needed nutrition and that we had bigger things to worry about then how we were going to feed her. We gave her the opportunity to grow and thrive. Ali’s feeding tube saved her life many, many times and it allowed us to concentrate on other aspects of her development rather than spending 24 hours a day trying to feed her. It was a gift and I say that because there are countries in the world where children like Ali do not get feeding tubes. Ali would have died without her tube, if not from starvation then from one of the many viruses that she got because she wouldn’t have had the nutrition to struggle through or a way to take the many medications that used to get her through the day.

I’m so thankful for that journey. I will always remember the first time Ali swallowed and the way it felt and I carry that with me because when it seems like the odds are stacked against us and I wonder how we will get through, it’s a reminder that sometimes, even when it seems like there’s no hope, there is.

Now, two years after having her feeding tube removed, Ali is still in feeding therapy. She has jaw issues and we are continuing our feeding journey as we try to teach her to chew. It can be frustrating and we are aware that the odds are stacked against her. I look back at that baby who couldn’t suck on her bottle and who threw up every ounce of food that she got through a tube running up her nose and into her stomach and I know how far we’ve come. Just a little bit further to go. I look forward to the day when I can stop buying a new slap chop every month but in the meantime I’m thankful for a journey that showed me that there are more victories in this life than defeats.

Happy Thanksgiving!

10 Things I’m Thankful For At Thanksgiving……..

I’m thankful little voices saying, “I love you”.

I’m thankful for friends that are still my friends even though I don’t spend a lot of time with them.  I had someone tell me recently that I wasn’t their friend because I never invite them to do things and I thought, “Wow, I wish my life was as easy as yours and as simple as that.”  That to me is such a shallow statement and I am so thankful that I have some amazing friends that even though we don’t talk that much or only see each other a couple times a year, I still know that they’re there and I can’t tell you how much I appreciate that.  I wish I could spend more time with all of you, it’s tough for so many reasons but one day I’ll get there and I am so thankful for the friends that will be waiting.

I’m thankful for teachers (and TAs) that see the potential in Ali.  I’m not naive, I know that on this journey, we will meet people that don’t see potential in her.  I understand that teaching her is a lot of work and that you don’t always see a lot of progress. I also know that teaching her takes extra time that could be spent on other children that may need that time to make gains and that’s why I am so thankful for the people that take the time to teach Ali.  While the goals may be different, Ali wants to learn and learning to read and count are skills that are just as valuable to Ali as to anyone.  Those skills are the difference between being dependent as an adult and having freedoms.  I know that she probably won’t grow up to graduate from the same university as I did but she’s going to do great things because people believe in her.  She needs to grow up knowing that she has potential too.  I am truly thankful for those of you that teach her and that see having that opportunity as a gift because people like you are going to change the course of her life.

I’m thankful for Therapists.  I’ve heard people say things like, “Kids talk when they’re ready.”, “They never go to high school in diapers.” or “Kids always eat when they get hungry.”.  I think Ali would have proved all of these statements very, very wrong had she not had a substantial team of therapists guiding us along.  There have been therapists that have made the choice not to work to with Ali because they either didn’t have the expertise or didn’t think it was worth their time so we are truly thankful for the people that haven’t given up even when faced with some really difficult tasks.  This morning, Ali told me to stay out of her way (rather rudely) while she was walking around the kitchen looking for her lunch stuff for tomorrow – thanks for that guys!!!!

I’m thankful for my family.  Although I wish they were closer so that we could have a big family Thanksgiving, I’m thankful that I know that if we need them, they’ll be here. I’m thankful for the support even from a distance and for the “little voice” in my mom’s head that tells her that we’ll be okay.  I do truly wish they were close enough to babysit but we’ll work on that!

I’m thankful that Madi is Madi.  When a little girl has a sibling with the kind of needs Ali had, it affects them in every way.  While I saw it (I still do), I was powerless to do anything about it.  There wasn’t enough of me to go around.  I tried so hard to be a good parent to both my kids but in the end, I just had to get through it.  But somehow, Madi managed to turn into a smart, kind, compassionate little girl.  She amazes me every day.  We are now at the point where we can give a lot more of ourselves to Madi and I am so glad that we are because every child deserves that.  I will always have regrets when it comes to Madi and how her life was when she was a little girl but hopefully we can make up for it from here on out.  Keep an eye out for Mother/daughter pink highlights on her birthday!

I’m thankful for Ali, the little girl that came into our lives and turned everything into chaos.  I’m thankful for progress and for her amazing sunny personality.  I’m thankful for all the stress, hard work and every appointment because the alternative is much more difficult.  I’m thankful for sentences like, “I have go pee.  I can no wait” and for the opportunity to watch her grow, learn and meet milestones.  I’m thankful for having to hunt for 300ml containers of WHITE milk every week, for the potty seat that I carry around in my purse, for the sharps container the keeps tipping over in the closet and for the spoiled “cow cheeses” and yogurt drinks that I find in the car.  I’m thankful for all the people that she’s brought into our lives and all the lessons she’s taught me.  She has so much to give to the world and I’m thankful that I get a front row seat.

I’m thankful for Jason because although we take totally different approaches to pretty much everything, we are a team and we both want what’s best for our girls.  As different as we are and as different as our lives were before we met, we want the same things for our family (except maybe for the fact that I want a herd of shelties and he hates hair in his food).   He provides balance and without that, I’d be an anxious mess all the time (or rather “more” of an anxious mess).

I’m thankful for Shelties, dog hair in the food and all.  I’m thankful for dogs doing flyball turns off my butt while I’m washing dishes, for constantly having to chase them around to retrieve the “Poly Pockets” from their teeth, for hair balls in the corners and for the occasional time one ends up in the kitchen sink all on his own.  I’m thankful for them because as hectic as life gets, they force me to take time for myself (because if they didn’t get walked or exercised, they’d be nuts), they pick up all the food that falls on the floor and they keep me on my toes like nobody’s business.

Most of all, I’m thankful for today, for a cold snowy day sitting in the kitchen, watching my kids and my dogs play.  Never in the almost 7 years that we’ve been on this journey have I been so aware of what a miracle Ali is.  I don’t know if it was denial or self preservation or if I’ve just forgotten but in the first few years of our journey, aside from being terrified of the cancer risk, I don’t remember having much of a grasp of how fragile she was.  I sit here today on Thanksgiving, looking at my children playing with my dogs in my yard and think of the 6 families just like mine who have lost their children this year, all of them but one younger then Ali.  That’s 6 out of maybe 400 people gone in less than a year.  Looking back, I see what a struggle it often was and I can hardly believe that she’s the little girl that was so close to leaving us the Christmas she was born.  I’m thankful for my life with all it’s up and downs. Happy Thanksgiving to everyone from Jill, Jason, Madi and Ali!

A blog about living life one day at a time with an amazing little girl with Costello Syndrome.