Today, is Mother’s Day and although I’m just doing laundry and homework with the kids, I’m having a great day because BOTH of my girls wished me a happy Mother’s Day this morning. This is the first year that Ali has had the words to say, “Happy Mother’s Day” and it’s amazing to hear! I love her voice and the way she pronounces every single word in her special way. I’m so proud of her!

I hope all the wonderful moms out there get a gift as special as hearing Ali say, “Happy Mother’s Day”.

I know a lot of moms of children with special needs. These are some of the strongest women you will ever meet. They spend hours working with their children to try to make their lives the best they can be. They are not only moms but nurses, teachers, medical experts, advocates, therapists and cheerleaders. They put the needs of their children above everything else, often to the detriment of their own personal lives and sadly some friendships and then when their children defy the odds or succeed at something, they refuse to take any credit. Some of these moms stand by their children through countless surgeries, medical procedures and painful therapies and as hard as it is, they wouldn’t want to be anywhere else. Some of these moms do it knowing that time is limited with their child and some do it knowing that their child will never be independent and that they will need to live this life for the rest of their life but either way, they strive to help their child live life to the fullest. They are there every step of the way, not because they have to be but because they want to and they wouldn’t have it any other way. Some of these woman live lives that make mine look so easy and they do it with so much grace and are so thankful for what they have. Some of them are close friends and some are fellow Costello Syndrome moms, there are even a few that I’ve known since before I had kids! So many of them inspire me to a better mom. I know that a lot of them are wishing for something other than a material gift today. They are wishing for first words, first steps, a pain free day for their baby or peaceful outing with their kids. I hope they all get something special, especially the ones that are wishing for their kids to beat cancer or survive until next year on Mother’s Day.

Regardless of whether our kids have special need or are typical, none of us are perfect but there are many ways to be a great mom. It’s not easy but the most important thing is that we make sure that our kids always feel loved. By loved, I don’t mean buying them things or sharing poems on Facebook about how wonderful they are. That’s easy and doesn’t hold much meaning. I think as a mom, it’s my job to stand behind my children through thick and thin. We show our children that we love them by always supporting them and listening to them, always doing everything we can to help and trying our very best not to hurt them. I know it’s not always easy to put someone else ahead of yourself which is why I want to celebrate all the great moms. Sadly, there are children in this world who grow up without ever feeling like their moms really care. Can you imagine what a huge impact this would have on their lives? That’s why I think those of us that try really hard to be great moms and who have kids who always know they’re loved deserve to really be celebrated.

Happy Mother’s Day to all the mom’s in my life especially my mom and my sister. I’m very lucky to have their love and support through everything! There is nothing more important then knowing that your family is always in your corner and luckily for me, I never have any doubts!

April 10^th was International Siblings Day!  Today I’m going to tell you about my daughters and their amazing relationship.

Madi, our typical daughter is an amazing kid.  Her life is obviously influenced a lot by her sister’s syndrome.  How could it not be? When people think of Madi, I think sometimes they see a little girl that misses out on things because of her sister.  I don’t think Madi sees it that way at all and that’s part of what makes her so amazing.  When I look at Madi, I see a kind, caring, compassionate, smart little girl who loves her sister more than anything and I just don’t understand how that can be missing out.  She has an amazing bond with Ali.  She doesn’t see disability or weakness, she just sees Ali. Actually, Madi sees everyone as equal.  To Madi, Ali isn’t a little girl with a syndrome, she’s just her sister.  Madi is really an amazing big sister and I think if you asked her, she’d say that Ali’s is a pretty great little sister too.   Ali adores Madi and wants to do everything that she does.  Although I sometimes hear Madi complaining about her little “shadow”, Madi will play with Ali for hours on end.  They love to play together.  Sometimes they fight (I use that term lightly) but to be honest it makes me smile because that’s how it’s supposed to be.  When I ask Madi to help Ali, she never complains (even if she sometimes has to chase Ali to help her).  Madi knows that sometimes Ali needs extra help and she is always happy to provide it.  She understands that when we love someone, sometimes we have to make sacrifices for them.  Sometimes we have to put what others need before what we want.   It’s part of being a family.  It’s part of loving and supporting the people who mean the most to us.  In return,  Ali always tries to help Madi.  I’m pretty sure that a lot of the time, she’s not actually helpful but she’s returning the favour and to Ali that’s what counts!

I agree when people say that sisters and brothers of children with special needs give up a lot for their siblings but I also believe that they gain a lot.  I used to regret that Madi would never have a “typical” sibling relationship with her sister.  They are only two years apart. They were supposed to grow up gossiping with each other about life, boys and Jason and I.  I’m not sure that’s the kind of relationship that they’re going to have.   I do think that they will grow up the best of friends, each with their own unique things to offer the other.  I think that Ali will learn a lot from Madi and that in turn, Madi will learn from Ali.  I don’t think Ali would be where she is today without Madi and Madi wouldn’t be who she is without Ali.  They’re sisters and to them that’s all that matters.  The rest is just details.

Today is cancer screening day for Ali.  Every three months, we screen her for cancer.  To me, that is the hardest part of having a child with Costello Syndrome.  It’s cruel.  I can deal with all the other stuff.  It’s part of being her mom.  But dealing with the fact that my child has an increased risk of cancer and a significant risk of mortality is hard.

Ali has had 21 ultrasounds to check for cancer in 5 years.  She’s been scoped twice and had multiple MRIs.  You’d think it would get easier wouldn’t you?  Every time she goes for a hip x-ray, I panic.  I know that they could detect a tumor with an x-ray.  When she had her G-tube out, they did an ultrasound in the middle of the night to look at her bladder.  I almost passed out because I forgot to breath.  I was not prepared for a test that could detect cancer.  Every single time we scan her, I’m terrified.

Every three months, we have to face the very real fact that our daughter could have cancer.  It’s not just the fact that she could have cancer, these are very aggressive cancers, I face the fact, every three months that I could lose her.  I stand there for that test, knowing that one out of every five parents of a child with Costello Syndrome just like Ali, will eventually NOT get the all clear after their test.  What if it’s me?  What would I do?  I can’t stand the thought of her not being here anymore and I have to stand there and contemplate that.  We do it knowing that there is no research to prove that this testing will help our child survive.  We do it because it’s all we can do.  It gives us piece of mind for that one day that our child is cancer free.  Today, my daughter is cancer free.  Tomorrow, I won’t know anymore.  I know that there are lots of people around me who have faith that she will be okay.  That helps.  But I’m her mom and I always have the knowledge in the back of my mind that she probably won’t outlive me.  I carry that with me to every test and every appointment.  It’s hard to ignore it when you’re standing there staring at the u/s screen hoping that your child in not the one.  Today she wasn’t the one.  I’m so thankful for that.

February 28^th is International Rare Disease Day and in honor of Rare Disease Day, I’d love for you to learn a bit about Costello Syndrome.  I’m not going to give you a whole bunch of facts about the syndrome, but if you want to learn all about it, the best source of information is here – www.costellokids.com.

I think it’s important to understand that while being rare or having a child with a rare disease/syndrome can be scary and even isolating, it’s not actually that unique of a situation.  Did you know that 1 in 12 Canadians suffer from a rare disease or syndrome?  That’s why I believe that it’s so incredibly important to raise awareness for Ali, for all people with Costello Syndrome and for people with rare diseases and syndromes of all types.  Imagine suddenly realizing that your child is different, being told that they have a syndrome that you’ve never heard of and that none of your doctors have ever heard of (I’ve been there).   Imagine walking out into the world with that child and not having a support network to provide you with guidance or medical advice when you’re really struggling?  Imagine watching your child struggle and wondering if they’re going to survive and not having anyone who can tell you what might come next.  This is the reality for families of people with rare diseases, there are so many unknowns.  We sort of go through life not really knowing what comes next.  Our therapist struggle to find information and resources to helps us.  We treat our children by trial and error and when something doesn’t work, we simply start over.  It’s lonely and it’s hard but it happens to 1 in 12 Canadians.  Being rare is actually pretty common.

I think it’s important for Ali to grow up knowing that although she is rare (probably more rare then most people with rare syndromes) that she’s not alone.  I think the best way to do that is to talk about it.  That’s why I blog.  I share her and our family with the people who read my blog so that she grows up knowing that being rare does not mean that you’re alone.  It works!  We feel like Ali (and our family) is surrounded by love and by people that cheer her on every step of the way.  We feel like we have people to lift us up when times get tough and to celebrate with us when the really amazing things happen.  We certainly don’t feel alone in this journey.

We are the family of a child with a rare syndrome and in some ways, that makes us different and that’s okay.  But what wouldn’t be okay would be for Ali to grow up feeling isolated and like she doesn’t fit.  I worry about what comes next for Ali.  I worry about her being included socially and about her being able to keep up with her peers.  She’s such an amazing kid but it doesn’t change the fact that there are some things about her that will always make her different than the other kids and again, that’s okay.  Everybody’s different in some way and that’s why we raise awareness for her.  It breaks down barriers and helps people to see her for the incredible, strong little girl that she is.  It makes kids excited to meet her and to say that they know her.  It makes her life better.

So today is rare disease day.  Please tell someone about Ali and how incredible she is.  Please take a minute to think about all the people around you who go through life feeling isolated because they too are rare and remember that you can do something to change it.  Take an opportunity today to learn about someone rare.